Through its virtual platform, the onevoice community platform https://www.onegravesvoice.com provides the groundwork for collaboration among all members of this rare disease community. At rareLife solutions (the creator of onevoice), we believe that sharing and learning from each other’s experiences with rare disease empowers patients, caregivers, advocates, researchers, healthcare professionals, and industry partners to better manage, treat and educate about rare diseases and the lifestyles surrounding them. After all, the first step towards progress begins by starting the conversation (especially when what you’re talking about is rare and something not everyone has heard about)!
We understand that what you share about yourself and your rare disease is important and deserves respect. Just as you’re working with the patients, caregivers, advocates, community managers and other members on the onevoice platform to advance the rare disease experience, we’re working with you to do the same! As collaborators in this shared mission, we want to be completely open with you about how we’re amplifying your voice and the resources in the community using the onevoice platform to improve the rare disease ecosystem.
What is a onevoice platform?
A onevoice platform provides a forum for knowledge and community growth for all members within a rare disease ecosystem by curating links to high quality disease resources in one space and providing a virtual place to connect.
Is joining a onevoice community free?
Yep, we do not have a membership fee.
How old do I need to be to use a onevoice platform?
You must be at least 16 years old.
Why do I need to register?
While the use of rareCurate, our library of trusted resources, doesn’t require registration, the full use of the site’s features does. Having a member account allows you to participate in rareCourage conversations, which are only viewable by members.
Do you need my real name?
Nope, you don’t have to share your real name unless you’d like to.
What member information is visible to other community members?
Your username, role, profile page, and rareCourage posts are the only things automatically visible to logged in members. You can choose whether to display other information in your profile.
Do you track my IP address?
Your IP address is one of the pieces of data sent by your web browser to our partner, Google Analytics. You can read Google’s policies here (https://www.google.com/policies/privacy/partners/).
Do you collect information about members?
We do collect certain information about members which we use with the intention of improving the understanding and treatments for the rare disease and its community.
What types of information do you collect from members?
We only collect information that a community member voluntarily provides. Examples include biographical information (age, gender, city), photos, and disease info (symptoms, treatment, etc.).
Will you share or make my information public?
As we strive to use our platform to advance this disease ecosystem, we do share certain anonymous information collected with collaborators, people working to enhance onevoice, and most importantly, you and your disease community.
What type of member information is not shared or made public?
Except for some very important exceptions, we will not share a member’s name, password, email address, or mailing address as input during registration. Additionally, we won’t share your date of birth in your profile or your private messages.
How is the member information you collect shared?
Other than reporting adverse events, we do not share the information we collect as an individual data point; it is combined with the same type of information from other community members (in other words, we aggregate the data and strip out information that could be used to identify an individual). Occasionally, we may share anonymized excerpts about the onevoice platform as testimonials or in other ways.
How is my email address supplied during registration used?
Simply to stay in contact with you about happenings on the platform, opportunities in your disease space, and any questions or requests you have. You can modify your email preferences in mySettings.
We may also need to get in touch with you in the event of an emergency or to follow up if you mention an adverse event.
Are there any safeguards to ensure that the conversation within onevoice stays on topic?
We provide trained Community Managers for all onevoice platforms who ensure that rareCourage remains a safe, helpful, and welcoming space.
How safe are you against hacking?
We use HIPAA and HI-TECH certified layers of security to protect you and your postings against hackers seeking information you’ve chosen to remain private (although, please understand, anyone can register and see whatever you’ve chosen to show to the community).
How do you select the content in rareCurate?
Our research team is guided by our councils of expert physicians, healthcare professionals, advocates, patients and caregivers who represent a wide-variety of perspectives, geographies and personal and professional experiences to inform us as to information resources that are valuable to the community. By selecting a diverse set of experts, we also minimize bias from any particular perspective, institution or experience.
If you have any questions or concerns related to the information practices of this platform, please send us an e-mail at firstname.lastname@example.org, or write to us at the address below.
Last Updated: September 12, 2019
rareLife solutions, inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
© 2019 rareLife solutions, inc. All rights reserved.
Welcome community member and thank you for joining our community.
Please read these terms and conditions of use (“Terms”) carefully. These Terms are a binding agreement between you (“you”) and rareLife solutions, inc. (“rareLife solutions”, “we” or “us”). These Terms govern your use of our websites located at www.oneGRAVESvoice.com and any of our other websites, their respective subdomains, and software applications containing a link to these Terms (collectively, our “Sites”). Other people, a.k.a. users, who have agreed to these Terms or prior Terms for using our Sites are referred to as “community members” or “community member” or “member.” Our Sites provide a common online interactive space for community members to come together, share, learn and communicate.
BY USING ANY OF OUR SITES, YOU ARE STATING THAT YOU HAVE READ AND UNDERSTAND, AND AGREE TO BE BOUND BY, THESE TERMS (WHETHER OR NOT YOU CONFIRM YOUR AGREEMENT, SUCH AS BY CLICKING “I AGREE”). IF YOU DO NOT AGREE TO THESE TERMS, YOU ARE NOT PERMITTED TO USE ANY OF OUR SITES.
IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY, CALL 911 IMMEDIATELY.
Being a community member and Access
To become a community member of and access the area on any Site reserved for community members, rareLife solutions requires that you satisfy certain eligibility criteria set forth in the applicable registration form, for example, that you are any of the following:
A patient diagnosed with a specific disease or condition addressed on the applicable Site who is at least 16 years old (a “Patient”) or a parent or legal guardian acting for a Patient who is under 18 years of age or otherwise incapacitated;
A caregiver who is not a parent of or legal guardian for a Patient;
A friend/family member of a Patient;
Health care professional (e.g. physician, nurse, etc.);
Scientific or medical researcher;
Person who works in rare disease (non-medical);
Member of the news media; or
Student in the health sciences
You represent and warrant that the information you provide when registering as a community member, and all information you subsequently provide regarding yourself and your registration, is true and accurate and not misleading. The Sites are intended for individual users; profiles of entities or organizations are not permitted.
Community Member Account: In connection with particular features of our Sites, you may be required or permitted to create an account and password. You are responsible for maintaining the confidentiality of your password for any of our Sites, and you are solely responsible for all activities that occur under your account.
No Children. Children (under the age of 13 in the US or 16 in the EEA) are prohibited from registering as community members. By registering as a community member you represent that you are age 13 or older (in the US) and 16 or older (in case of EEA).
International Access. Our Sites are controlled and operated by us from our offices within the United States of America and are not intended to subject us to the laws or jurisdictions of any state, country, or territory other than the United States although the Sites may be compliant with such laws. If you do access and use any of our Sites outside the United States, you are responsible for complying with all applicable local, state, federal, national, provincial, foreign, and international statutes, treaties, regulations, rules, orders, and other laws (each, a “Law”) with respect to such access and use.
No Medical Advice
The information, files, documents, text, photographs, images, audio, messages, and any materials accessed through or made available for use or download through any of our Sites (“Content”), including, without limitation, any information about diseases, conditions, treatments, medicines or personal experiences, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment. Nothing on our Sites should be construed as the giving of advice or the making of a recommendation regarding any decision or action related to your health or the health of others. We do not monitor or authenticate the information contained on our Sites for accuracy, safety, or reliability. Inclusion of Content on any of our Sites does not mean that rareLife solutions supports or recommends a specific treatment, drug, physician, test, or other information on our Sites. Any reliance on such Content is solely at your own risk. You should consult a doctor or other qualified healthcare professional regarding any questions you have about your health or before making any decisions related to your health or wellness. If you are a doctor or other qualified healthcare professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment, which you should exercise in evaluating the information on any of our Sites. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services or treatments mentioned are right for you or others.
WE CARE GREATLY ABOUT THE WELL-BEING OF OUR MEMBERS, SO PLEASE CALL YOUR DOCTOR OR 911 IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY OR FEEL YOUR LIFE IS IN DANGER. ALL MENTIONS OF SUICIDE, SUICIDAL THOUGHTS, SELF-HARM, OR ANY OTHER BEHAVIOR THAT CAUSES CONCERN ABOUT A MEMBER’S IMMEDIATE SAFETY AND VIEWED BY RARELIFE SOLUTIONS WILL RECEIVE A RESPONSE DIRECTING THE MEMBER TO THE FOLLOWING SUICIDE HELPLINES:
National Suicide Prevention Lifeline (US): 1-800-273-8255, https://suicidepreventionlifeline.org/
Samaritans (UK): 116 123, http://www.samaritans.org/
International directory of helplines: http://www.befrienders.org/directory
Appropriate and Lawful Use of Site
You agree not to use any of our Sites or the content available on our Sites:
in violation of these Terms or any Law;
to post or upload information or content that is false, inaccurate, or misleading;
to transmit or display any material that is illegal, abusive, graphically distressing, inflammatory, profane, threatening, hateful, tortious, defamatory, discriminatory, obscene, sexually explicit or contains pornography, libelous, invasive of another’s privacy, hateful, or otherwise objectionable or offensive, or to harass or harm rareLife solutions, another entity or another individual;
to infringe any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party;
to transmit any unsolicited or unauthorized advertising or promotional materials;
to transmit any material that contains adware, malware, spyware, software viruses, or any other harmful code;
to impersonate any person or entity, or otherwise misrepresent your affiliation with a person or entity;
to interfere with or disrupt any of our Sites or any software, hardware, telecommunications equipment or networks used by us;
disparage or injure the reputation or goodwill of rareLife solutions, or any of its officers, directors, or employees;
further or promote any criminal activity or enterprise or provide instructional information about illegal activities;
obtain or attempt to access or otherwise obtain any materials or information through any means not intentionally made available or provided for through our Sites or
interfere with other community members’ use and enjoyment of our Sites (for example, by spamming, soliciting or overly promoting personal interests).
You are prohibited from violating or attempting to violate the security of any of our Sites, including, without limitation:
accessing data not intended for such community member or logging onto a server or an account which the community member is not authorized to access;
attempting to probe, scan or test the vulnerability of a system or network or to breach security or authentication measures without proper authorization; or
accessing or using any Site or any portion thereof without authorization, in violation of these Terms or in violation of Law. Violations of system or network security may result in civil or criminal liability. We will investigate occurrences that may involve such violations and may involve, and cooperate with, law enforcement authorities in prosecuting people who are involved in such violations. You agree not to use any device, software or routine to interfere or attempt to interfere with the proper working of any Site or any activity being conducted on any Site.
We reserve the right to investigate and take appropriate legal action against anyone who, in our sole discretion, violates these Terms, including without limitation, removing the offending content from our Sites, suspending or terminating the access of such violators to our Sites and reporting violations to the law enforcement authorities.
Our Sites may feature interactive tools, journals, personal pages, message boards and other public forums where community members with similar interests or medical conditions can share information and support one another or where users can post questions for others to answer (“Interactive Areas”). By using such features, you acknowledge and agree that the information contained therein, including responses from medical professionals, is intended solely for general informational purposes and are not intended nor implied to be a substitute for professional medical advice relative to any specific medical condition. We do not guarantee monitoring or authentication of the information contained in any such Interactive Areas. By submitting communications or content to any Interactive Area, you agree that such submission is non-confidential for all purposes. You agree that following actions shall constitute a material breach of these Terms: impersonating another person or entity, misrepresenting yourself or your credentials, allowing any other person or entity to use your identification for posting or viewing Content, posting excessively or “spamming” or “flaming” or “inciting discord” or “selling products or remedies” or otherwise engaging in any other conduct that restricts or inhibits any other person from using or enjoying the Interactive Area.
Related Agreements and Policies.
Code of Conduct. You agree to abide by the Code of Conduct, which outlines acceptable use and participation on our Sites, including when certain activities or communications may result in suspension or termination of your access to our Sites.
Additional Terms. Some of our Sites, or portions of our Sites, may be subject to additional terms (“Additional Terms”), which will be described in separate policies posted on the applicable Sites. The Additional Terms will supplement these Terms and will control over any conflict between the Additional Terms and these Terms with respect to the specific Sites, or portions thereof, subject to the Additional Terms.
Our Content and Proprietary Rights.
As between you and us, we own all content developed or acquired by us (“Our Content”), including but not limited to our selection and arrangement of Third Party Content (as defined below), but excluding Third Party Content itself. Our Content is protected under United States and international copyright Laws and is subject to other intellectual property and proprietary rights and Laws. In addition, the “rareLife solutions” and “onevoice” name and logo, as well as certain other of the names, logos, and materials displayed in or through our Sites constitute registered and unregistered trademarks, trade names, service marks, or logos (collectively, the “Marks”) of us, our content providers, partners, collaborators, endorsers or other entities. Ownership of the Marks and the goodwill associated with them remains with us or those other entities. We authorize you to view or download a single copy of a reasonable amount of Content from our Sites, solely for your personal, noncommercial use. You are not authorized to use any of Our Content or the Marks other than as expressly provided in these Terms or as expressly licensed to you. You must abide by all rights notices, information, or restrictions contained in or attached to any of Our Content and must not remove any trademark, copyright, or other notice from our Sites or any of Our Content.
The technology and software underlying our Sites is our property (the “Software”). You agree not to copy, modify, create a derivative work of, reverse engineer, reverse assemble or otherwise attempt to discover any source code, sell, assign, sublicense, or otherwise transfer any right in the Software. Any rights not expressly granted herein are reserved by rareLife solutions.
Third Party Content (Including Your Content).
No Responsibility for Third Party Content. Under no circumstances will we be liable in any way for any content or materials of any third parties (including community members), cluding, but not limited to, for any errors or omissions in any content, or for any loss or damage of any kind incurred as a result of the use of any such content (collectively, “Third Party Content”) on our Sites. We do not control any Third Party Content on our Sites and do not guarantee the availability or display of any Third Party Content. We reserve the right to remove any Third Party Content at anytime in our sole discretion. Any opinions, advice, statements, views, positions, services, offers, or other Third Party Content expressed or made available on our Sites are solely those of the respective authors or distributors, and do not necessarily reflect our opinions, views, or position. We do not endorse any particular products, services or treatments. We take no responsibility and assume no liability for any Third Party Content. You use or rely on Third Party Content at your own risk.
Your Content. If you submit information or material through any means (collectively, “Your Content”) to any of our Sites, you, to the extent you have any rights in such information or material, grant us a nonexclusive, royalty-free, worldwide, perpetual, irrevocable, and fully sublicensable right to use, reproduce, modify, adapt, publish, translate, create derivative works from, distribute, and display Your Content throughout the world in any media. You grant us and our sublicensees the right to use the name, screen name, city, state, country or zip code, and other biographical information that you submit in connection with Your Content, if we or they choose. You represent and warrant that:
you own or otherwise control all of the rights to the content that you post, including any intellectual property or other proprietary rights other than content that you clearly identify as Third Party Content, e.g., links to third party websites;
Your Content is accurate;
neither Your Content nor your posting or submission of Your Content violates any of these Terms, including without limitation the prohibitions on use of our Sites set forth above; and
neither Your Content nor your posting or submission of Your Content will cause injury to any person or entity, including any privacy or security risk. rareLife solutions has no responsibility for any of Your Content or the consequences of your sharing any of Your Content with others. We have the right but not the obligation to monitor and edit or remove any content from our Sites in our sole discretion without notice or consent.
Notice and Takedown Procedures / Copyright Agent If you believe any materials accessible on or from any of our Sites infringe your copyright, you may request removal of those materials (or access thereto) from any of our Sites by contacting our copyright agent (identified below) and providing the following information:
Identification of the copyrighted work that you believe to be infringed.
Identification of the material that you believe to be infringing and its location. Please describe the material, and provide us with its URL or any other pertinent information that will allow us to locate the material. Your name, address, telephone number and (if available) e-mail address.
A statement that you have a good faith belief that the complained of use of the materials is not authorized by the copyright owner, its agent, or the law.
A statement that the information that you have supplied is accurate, and indicating that “under penalty of perjury,” you are the copyright owner or are authorized to act on the copyright owner’s behalf.
If any content that you submitted has been removed as a result of a notification as described above and you believe that such content was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the content at issue.
Third Party Services and Sites. Portions of our Sites may allow you to use third party products and services, which may include without limitation social networking services, and our Sites may contain links to third party websites or resources (such products, services, websites, and resources, collectively “Third Party Services”). We are not associated with such Third Party Services. Your use of Third Party Services is subject to the license agreements, terms and conditions, privacy policies, and other policies and agreements applicable to such Third Party Services. We do not approve or endorse any Third Party Services, their content, or any views expressed on any Third Party Service, nor are our Sites approved or endorsed by any Third Party Services. rareLife solutions has no responsibility to you for any Third Party Services.
Linking to Our Sites. If you wish to link to any of our Sites, you may include an active link on any website you control directing a browser to the home page of that Site, provided that you agree to remove the link at any time upon our request. You may not link to or otherwise provide access to any of our Sites in any way that: (a) alters the look, feel, or functionality of any aspect of our Sites; or (b) in any way that disparages our Sites or products or that could injure the reputation or goodwill of rareLife solutions or any of its products.
Infringement Claims. We respect the intellectual property rights of others. Accordingly, we have a policy of removing Third Party Content that violates copyright, trademark, or other intellectual property Laws, suspending access to all or any portion of our Sites to any community member who uses our Sites in violation of any such Law, and/or terminating in appropriate circumstances access to our Sites and the account (if any) of any community member who uses our Sites in violation of any such Law. If you believe your copyright, trademark, or other intellectual property right is being infringed by a user of any of our Sites, please provide written notice to us at email@example.com
Indemnity and Release. You agree that you will release, indemnify and hold harmless us, our affiliates (if any), and our or their respective content providers, suppliers, distributors, or customers, and any of our or their respective officers, directors, employees, contractors, representatives, or agents (collectively, the “rareLife solutions Parties”) for any and all claims, actions, losses, damages and expenses (including attorneys’ fees) arising out of or resulting from: (i) your use of our Sites, (ii) Your Content, (iii) your connection to our Site, (iv) your violation of these Terms, (v) or your violation of any rights of another. If you are a California resident, you waive California Civil Code Section 1542, which says: “A general release does not extend to claims which the creditor does not know or suspect to exist in his favor at the time of executing the release, which if known by him must have materially affected his settlement with the debtor.” If you are a resident of another jurisdiction, you waive any comparable statute or doctrine.
Disclaimer of Warranties. YOU UNDERSTAND AND AGREE THAT USE OF ANY OF OUR SITES, OUR CONTENT, ANY THIRD PARTY CONTENT, OR ANY THIRD PARTY SERVICES IS AT YOUR SOLE RISK. OUR SITES ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. THE RARELIFE SOLUTIONS PARTIES DISCLAIM ALL REPRESENTATIONS AND WARRANTIES OF ANY KIND, WHETHER EXPRESS, IMPLIED, OR STATUTORY, WITH RESPECT TO OUR SITES, OUR CONTENT, ANY THIRD PARTY CONTENT, OR ANY THIRD PARTY SERVICES (INCLUDING, BUT NOT LIMITED TO, THE IMPLIED OR STATUTORY WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR USE OR PURPOSE, TITLE, QUIET ENJOYMENT, AND NON-INFRINGEMENT AND ANY WARRANTIES ARISING OUT OF COURSE OF DEALING, USAGE, OR TRADE). IN PARTICULAR, THE RARELIFE SOLUTIONS PARTIES DO NOT REPRESENT OR WARRANT THAT ANY INFORMATION OR OTHER CONTENT OBTAINED OR VIEWED BY YOU AS A RESULT OF YOUR USE OF OUR SITES WILL BE ACCURATE OR RELIABLE, OR THAT YOUR ACCESS TO OUR SITES OR CONTENT WILL BE UNINTERRUPTED OR ERROR-FREE. THE RARELIFE SOLUTIONS PARTIES DO NOT WARRANT THAT FILES AVAILABLE FOR DOWNLOAD WILL BE FREE OF VIRUSES, WORMS, TROJAN HORSES OR OTHER DESTRUCTIVE PROGRAMMING. YOU ARE RESPONSIBLE FOR IMPLEMENTING PROCEDURES SUFFICIENT TO SATISFY YOUR NEEDS FOR DATA BACK UP AND SECURITY. THE RARELIFE SOLUTIONS PARTIES DISCLAIM ALL EQUITABLE INDEMNITIES.
Limitation of Liability. YOU UNDERSTAND AND AGREE THAT TO THE EXTENT PERMITTED UNDER APPLICABLE LAW, IN NO EVENT WILL ANY OF THE RARELIFE SOLUTIONS PARTIES BE LIABLE UNDER ANY THEORY OF LIABILITY (WHETHER IN CONTRACT, TORT, STATUTORY, OR OTHERWISE) FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL, PERSONAL INJURY/WRONGFUL DEATH, PUNITIVE, OR EXEMPLARY DAMAGES, (EVEN IF SUCH PARTIES WERE ADVISED OF, KNEW OF OR SHOULD HAVE KNOWN OF THE POSSIBILITY OF SUCH DAMAGES), INCLUDING BUT NOT LIMITED TO AS A RESULT OF: (A) YOUR USE OF OR INABILITY TO USE ANY OF OUR SITES, (B) ANY OF OUR CONTENT, ANY THIRD PARTY CONTENT, OR ANY THIRD PARTY SERVICES AVAILABLE THROUGH ANY OF OUR SITES OR (C) ANY LOSS OF DATA. SHOULD ANY RARELIFE SOLUTIONS PARTIES BE FOUND TO BE LIABLE TO YOU OR ANY THIRD PARTY NOTWITHSTANDING THE FOREGOING, SUCH LIABILITY WILL NOT EXCEED $100.00 IN THE AGGREGATE.
Exclusions and Limitations. Some jurisdictions do not allow the exclusion of certain warranties or the limitation or exclusion of liability for incidental or consequential damages. Accordingly, some of the above limitations and disclaimers may not apply to you. To the extent that we may not, as a matter of applicable Law, disclaim any implied warranty or limit our liabilities, the scope and duration of such warranty and the extent of liability of the rareLife solutions Parties will be the minimum permitted under such applicable Law.
Refusal of Service; Modification of Sites; Termination. We reserve the right to refuse service, disable or prohibit logins, remove or edit content (including Third Party Content), limit access to content, or modify or discontinue any of our Sites or features on any of our Sites in our sole discretion. We reserve the right to charge for membership and/or to provide existing or additional optional services for a fee. We may terminate, suspend, or modify your access to all or part of any of our Sites, without notice, if you violate these Terms or you engage in any conduct that we, in our sole and absolute discretion, believe is in violation of any applicable Law or is otherwise harmful to the interests of us, any other community member of any of our Sites, or any third party.
Disputes. These Terms and the relationship between us will be governed by the Laws of the State of Connecticut as applied to agreements made, entered into, and performed entirely in Connecticut. All lawsuits arising out of or relating to these Terms or your use of any of our Sites will be brought in the Federal or State courts located in Connecticut. We and you hereby irrevocably submit to the exclusive personal jurisdiction of such courts for such purpose and waive any objection to such courts on any basis, including without limitation improper venue or inconvenience of the forum. You agree that regardless of any statute or law to the contrary, any claim or cause of action arising out of or related to use of our Sites or these Terms must be filed within one (1) year after such claim or cause of action arose or be forever barred. You may only resolve disputes with us on an individual basis and may not bring and expressly waive bringing a claim as a plaintiff or a class member in a class, consolidated, or representative action. Class arbitrations, class actions, private attorney general actions, and consolidation with other arbitrations are not allowed. YOU HEREBY WAIVE YOUR RIGHT TO A JURY TRIAL IN ANY CLAIM OR CAUSE OF ACTION ARISING OUT OF YOUR USE OF OUR SITES OR THESE TERMS.
Electronic Communications Notice. When you use our Sites or send emails to us, you are communicating with us electronically. You consent to receiving communications from us electronically. We may communicate with you by email or posting notices on the applicable Site. You agree that all agreements and other communications that we provide to you electronically satisfy any legal requirement that such communications be in writing. In order to access any such communications, you must have a computer or other Internet-enabled device. In order to retain copies of any such communications, you must have a printer or data storage device. If you have a printer, you may print paper copies of any such communications for your own use. If you wish to withdraw your consent for us to communicate with you electronically, you may not use our Sites.
Mobile Site. Our Sites may include certain services that are available via a mobile device, including (i) the ability to upload content to our Sites via a mobile device and (ii) the ability to browse our Sites from a mobile device (collectively, the “Mobile Site”). To the extent you access our Service through a mobile device, your wireless service carrier’s standard charges, data rates and other fees may apply. In addition, downloading, installing, or using certain elements of the Mobile Site may be prohibited or restricted by your carrier, and not all aspects of the Mobile Site may work with all carriers or devices. By using the Mobile Site, you agree that we may communicate with you regarding rareLife solutions by electronic means and that certain information about your usage of the Mobile Site may be communicated to us.
Last Updated: September 12, 2019
rareLife solutions, inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
© 2019 rareLife solutions, inc. All rights reserved.
The rareLife solutions onevoice website https://www.onegravesvoice.com/ (the “Site”) is specifically designed to harness the power of collaboration in rare disease — creating an online solution for all rare disease stakeholders. Various feature groups within the “Site” allow visitors and registered users to access curated disease information, clinical trial tools, and share experiences and information about their diseases, conditions, and symptoms and provide compassion, empathy and encouragement to help build a strong community for all rare disease stakeholders. In order to explore certain restricted areas of the Site, visitors must register to become community members (“community members”). If you do not register as a community member (“visitors”), the only information the Site will collect from you is the non-personally identified information collected through “cookies,” as described below in the section on cookies.
1. Information We Collect
I. Personally Identifiableuring the registration made viewable to other members of the community.lect and how we use itvacy and value the trust of our co
Personally Identifiable Information” (“PII”), is information that identifies an individual personally, such as first and last name, date of birth, postal address, email address, and telephone number. This is information you voluntarily share with us directly either when you register or if you post in any of the communities. Examples of PII may include but are not limited to- name, email address, and password as input during registration, mailing address, as collected from registration, email, private message, or other activities; date of birth, as collected in a community member profile
Demographic or biographical information, such as age, gender, ethnicity, religion, and location (city, state, country) or in some instances IP address;
Condition/disease information, including diagnosis, symptoms (e.g., frequency, duration, severity), family history;
The course of treatment (e.g., medicines, surgeries, therapies, etc.), including side effects;
Photographs or pictures;
Account information from social media platforms;
Sensor information from fitness or activity trackers;
Laboratory or diagnostic test results;
Electronic health records;
Information shared via free text fields, such as in rareCourage, rareClinical, rareProfile, myBinder, rareChat, rareQuestionnaires;
Connections to other community members on the Site (e.g., rareCourage, rareTeams, rareMates) and people outside the Site shared by a community member.
Keep in mind, if you post PII on the Site, that PII is generally accessible to and may be collected and used by other community members and may result in unsolicited messages or other forms of contact from other community members. We advise you to exercise caution and discretion when posting PII in such areas of the Site. You are solely responsible for the information and other content you post on or through the Site. See terms and conditions
The Site also automatically collects information about you as a Site visitor that is not PII but relates to your use of the Site. Non-PII is aggregated information, demographic information and any other information that does not reveal your specific identity. Non-PII is “passively” collected from you through browser navigational tools, such as cookies and pixel tags. These types of technologies enable the Site to compile statistics about our daily number of site visitors or specific page requests, while not identifying you personally, other than by your IP address, which is the Internet Protocol address of the computer that you use to access the Site. We also do not authorize unaffiliated third parties to collect any personal information from you on the Site for purposes of such online tracking.
A cookie is a small data file that a website transfers to a user’s hard drive when a user visits the website. A cookie file can contain information such as a unique ID that the website uses to track the pages visited and is a standard method of registering website user preferences. These preferences are stored in a file on your computer’s hard disk drive. We also use ‘analytical’ cookies. These allow us to recognize and count the number of visitors to the Site and to see how visitors move around the Site when they’re using it. This helps us improve the way our website works, for example by making sure users find what they need easily.
Our Site uses both persistent and session cookies. Persistent cookies are cookies that stay on your computer permanently until you “manually” delete them. Session cookies delete themselves automatically when you leave a website and go to another one or shut down your browser.
You can set your browser to accept all cookies, to reject cookies, or to notify you whenever a cookie is offered so that you can decide each time whether to accept it. However, refusing a cookie may in some cases preclude you from using, or negatively affect the display or function of, the Site or certain areas or features of the Site. To learn more about cookies, including how to enable cookies, change your browser settings and find and delete cookies on your hard drive, please refer to your web browser’s help menus or visit www.allaboutcookies.org.
How We Use this Information
PII. We may use the PII collected through the Site for any or all of the following purposes:
Responses to Requests. We may use PII about you to respond to your requests, such as to answer your questions about using the Site, content you may have posted, your experience using the Site, and to provide you with clarifications, explanations or perhaps the benefits offered by features in the Site.
Emergency. We may use PII in the case of an emergency or other situation that we determine requires rareLife solutions to directly contact the community member.
Adverse Events. rareLife solutions, as required by law and/or its Collaborators, may also be required or alternatively at its option for the greater good, to report certain PII as adverse event and drug safety information to the U.S. Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and/or other U.S. or international governmental organizations, as well as directly to pharmaceutical and medical device companies. rareLife solutions will not provide PII to such government entities but may contact community members for follow-up if requested by the government or Collaborators. The information rareLife solutions provides may include, but is not limited to, information posted or submitted by community members in rareCourage, rareClinical, my rareJourney, rareChat, rareQuestionnaires or other similar data collectors in the Site. In addition, certain sections of our Site may be provided with the support of Collaborators. These Collaborators may have adverse event reporting requirements that relate to regulated products that are used by community members, and rareLife solutions may assist such Collaborators with reporting adverse events to regulatory agencies.
To learn more about adverse event reporting to the US Food and Drug Administration: http://www.fda.gov/Safety/MedWatch/
Communications with community members who Subscribe. rareLife solutions will communicate with you if you join our mailing list or otherwise accept to be notified of certain events and activities. You may opt out of receiving such communications at any time, as described in those communications and in Section 8 below.
Internal Business Purposes. We use PII about you for our internal business purposes, including in particular to help us determine usage of all of our feature groups (including rareCourage, rareClinical, my rareJourney, rareChat and other data collectors), and help us improve our offerings. We also use PII for related internal purposes, such as data analysis, audits, enhancing the Site, identifying usage trends and determining the effectiveness of our promotional messaging.
Non-PII Information may aggregate certain types of non-personally identifiable information such as the number of patients with a particular disease or condition, on a particular treatment, or experiencing a particular symptom. This anonymized (or de-identified) information would be visible by individuals that are not community members, and great care is taken in anonymizing this information so it is unlikely that someone could be identified. We may use non-PII to help us improve the Site, such as by analyzing usage of certain pages or functions on the Site.
How We Share Information
PII. We may share PII we collect through the Site under certain circumstances, including:
Affiliates. We may share PII with any entities that may become affiliates of rareLife solutions.
rareLife solutions Staff and Moderators. rareLife solutions staff and moderators may sometimes need access to your PII in the course of troubleshooting problems or resolving complaints.
Research Collaborations. Unless otherwise agreed to with a platform sponsor, rareLife solutions may share or sell certain anonymized information from onevoice to Collaborators, such as pharmaceutical or medical device manufacturers, advocacy organizations, and academic institutions that are researching and analyzing ways to better understand patient experience and improve treatment and patient outcomes.
Surveys. rareLife solutions may occasionally ask community members to complete voluntary surveys and/or polls about their experiences, unmet needs and/or other topics, including the various features within onevoice or proposed to be included. rareLife solutions may aggregate anonymized data and combine such responses with community members’ PII and share or sell it to Collaborators.
Third Party Service Providers. We may share PII with unaffiliated third parties who provide us with services, such as the developer and designer of the Site, to provide technology, data analysis, or similar services.
Educational Partners/Providers. On occasion, a third-party educational provider or partner (“Provider/Partner”) will ask us for a list of the people who participated in a particular webinar, Q&A, or online community chat activity that was offered by rareLife solutions through the Site. In response to such a request, we will provide the Provider/Partner with anonymized and aggregated PII, unless the community member participant chose to be identified or contacted as part of signing up for the educational activity.
Third Parties for Marketing. We do not share PII with unaffiliated third parties for their own marketing purposes.
Acquirers or Assignees. In the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of rareLife solutions, any affiliate, or its assets, we may transfer any and all information that we collect from Site users to the acquiring party or assignee.
Use of PII. Under certain circumstances, rareLife solutions may use your PII, including but not limited to:
If a community member registers or switches to the status of a licensed healthcare professional (HCP) or researcher, the community member’s full name and affiliation will be viewable;
If a community member agrees to participate in a rareLife solutions-organized activity such as workshops or conferences, rareLife solutions may share the community member’s information (e.g., name, email) for the purpose of planning and executing the activity;
If a community member explicitly opts in to have their PII shared with a Collaborator, rareLife solutions will share the information as instructed by the community member (e.g. co-registration with a non-profit).
Collaborators. Community members should understand that the information they post on public areas of the Site may be shared in the various communities built by rareLife solutions, including other patients and third parties but not limited to pharmaceutical and medical device makers, contract research organizations, advocacy groups, academic medical centers, and research institutions (“Collaborators”). While community members are encouraged to share their information, greater amounts of information or data may increase the likelihood that a community member could be located or identified.
Opt Out. At any time, you may opt out of allowing rareLife solutions to use your PII for the purposes noted in this section by using our contact us form or by sending us an email at firstname.lastname@example.org. We will process your request within a reasonable time. However, please note that in certain instances, we may have already used your PII consistent with this Policy prior to your opt out date.
Other Information. We may share non-PII, such as the Site usage patterns of Site visitors on an aggregate basis, with third parties, for instance as a poster presentation at a medical conference
How Can You Manage PII We Maintain?
Updating or Correcting PII. If you would like to review, correct, update or remove PII about you that you previously provided to us (other than your birth date), you may do so by visiting your “settings” page.
If you are unable to locate that page, please inform us by sending us an e-mail at email@example.com. For your protection, we will only implement such requests with respect to the PII associated with the particular email address that you use to send us your request, and we may need to verify your identity before implementing your request.
How Do We Protect and Maintain PII Collected Through the Site?
Security. We use reasonable organizational, technical and administrative measures to help protect against the loss, misuse and alteration of the information under our control. rareLife solutions uses a third-party data security vendor, which stores information and data collected on our Sites in a manner that is consistent with the same integrity, rigor, and technical standards required under the HIPAA Security Rule. However, no data transmission over the Internet or data storage system can be guaranteed to be 100 percent secure. Please exercise caution in sending us any information you consider confidential. It is your personal responsibility to secure your own copies of your passwords and related access codes for our online resources.
Data Integrity and Retention. We will retain PII about you for the period necessary to fulfill the purposes outlined in this Policy or our data retention policies unless a longer retention period is required by law. However, rareLife solutions cannot guarantee the identity of any other community members with whom a community member may interact in the course of using the Site or who may have access to a community member’s PII. Additionally, we cannot guarantee the integrity or authenticity of any data that community members provide about themselves
Social Logins. To register and log in to your account, you also have the option of authenticating yourself with your existing profile on one of the following social networks, Facebook or Google+, and registering or logging in. The information we require for registration or login is (i) your name and (ii) your email address. After your express consent to the use of the transmitted and required data for purposes of registering and/or logging into the Site, your data will be stored by us and used for the purposes as stated within this Policy. [There is no link beyond the authentication process between your customer account created with us and your account on the corresponding social network.] In order to perform the authentication process for registration and login, your IP address is transmitted to the respective social network provider. We have no influence on the purpose and scope of data collection and on the further processing of the data by the respective provider of the social network. For further information, please read the data protection information of the respective provider:
1) Facebook Inc. – 1601 S California Ave, Palo Alto, California 94304, USA;
2) Google Inc. – 1600 Amphitheater Parkway, Mountainview, California 94043, USA; https://policies.google.com/technologies/partner-sites?hl=en and https://policies.google.com/privacy?hl=en&gl=us
Facebook Ads. We may use the “Facebook Pixel” from Facebook Inc. (1601 S California Ave, Palo Alto, California 94304, USA) on the Site. This allows user behavior to be tracked after they have been redirected to this Site by clicking on a Facebook ad. This enables us to measure the effectiveness of Facebook ads for statistical and market research purposes. The data collected in this way is anonymous to us, i.e. we do not see the personal data of individual users. You can object to the collection of data via Facebook pixels and the processing of your data to display Facebook Ads. To adjust the settings concerning which advertisements are shown on Facebook, you can visit Facebook’s dedicated page and follow the instructions to change the settings for usage based advertisements: https://www.facebook.com/settings?tab=ads. You can opt out of the collection and use of information for ad targeting by following Facebook’s published opt-out instructions.
YouTube. We have integrated YouTube videos into our Site, which are stored on http://www.YouTube.com and can be played directly from our Site. These are integrated in the “extended data protection mode”, i.e. no data about you as a user will be transmitted to YouTube, if you do not click on the videos to start playing them. Only when you play the videos will the data referred to in this paragraph be transferred to YouTube. We have no influence on this data transfer. If you are logged in to Google (an affiliate of YouTube), your information may be directly associated with your Google account. If you do not wish to be associated with your profile on YouTube, you must log out of Google before activating the button.
Google Analytics. Our Site uses Google Analytics, a web analysis service of Google, Inc., 1600 Amphitheatre Parkway, Mountain View, CA 94043 USA, www.google.com (“Google Analytics” or “Google”). Google Analytics employs cookies that are stored to your computer in order to facilitate an analysis of your use of the Site. The information generated by these cookies, such as time, place and frequency of your visits to our Site, including your IP address, is transmitted to Google’s location in the US and stored there. Google uses this information to analyze your use of our Site, to compile reports for us on internet activity and to provide other services relating to our Site. Google Analytics also offers a deactivation add-on for most current browsers that provides you with more control over what data Google can collect on websites you access. You can find additional information on how to install the browser add-on referenced above at the following link: https://tools.google.com/dlpage/gaoptout?hl=en.
CALIFORNIA PRIVACY RIGHTS Pursuant to Section 1798.83 of the California Civil Code, a California resident who has provided Personal Information to a business with whom he/she has established a business relationship for personal, family, or household purposes (“California Customer”) is entitled to request information about whether the business has disclosed Personal Information to any third parties for the third parties’ direct marketing purposes. Upon receipt of a request by a California Customer, the business is required to provide a list of all third parties to whom Personal Information was disclosed in the preceding calendar year, as well as a list of the categories of Personal Information that were disclosed. You can make a request for this information by emailing us at firstname.lastname@example.org or by writing to us at the address given at the bottom of this policy.
EUROPEAN ECONOMIC AREA DATA SUBJECT RIGHTS If you are a natural person residing within the European Economic Area (“Data Subject”), the following additional rights as expressed under Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 known as the General Data Protection Regulations (“GDPR”) are applicable to you: 1. Personal Data: For the purposes of this section, “Personal Data” means collectively PII, Unique Identifiers, Advertising Identifiers, and Location Data which you have provided to, or otherwise collected by rareLife solutions when you use and otherwise access the platform. 2. Basis for Processing Data: rareLife solutions relies on the consent of the Data Subject to process personal information. Data Subjects must be at least the age of 16 to consent to the processing of their Personal Data. Data Subjects under the age of 16 must obtain their parent’s or legal guardian’s permission to consent to the processing. On other occasions, we may process information when we need to do so to fulfill a contract, provide services or where we are required by law to do so. 3. Access/Portability: You may access, correct, or modify the Personal Data you provided to rareLife solutions and associated with your account. Note that we may request to verify your identification before fulfilling your request. You can also request that your personal information is provided to you in a commonly used electronic format so that you can share it with other organizations. You may do so by contacting our privacy team and they will send you the Data Subject Access Request (DSAR) form to process your request. 4. Forgotten: You may request to have your Personal Data erased, or otherwise request that your Personal Data not be processed. Please note that the Service, or parts of the Service, may become inaccessible or otherwise not function properly if you request to have your Personal Data erased or not be processed. You may do so by contacting our privacy team as described below. 5. Object, Restrict, or Withdraw Consent: You may withdraw consent you previously provided to rareLife solutions or otherwise object to or restrict the processing of your Personal Data. Please note that the Service, or parts of the Service, may become inaccessible or otherwise not function properly if you withdraw certain consents or otherwise object to restrict the processing of your Personal Data. You may do so by contacting our Privacy Team and they send you the Data Subject Withdrawal Form (DSWF) to process your request. 6. Supervisory Authority: If you have a concern with the handling of your Personal Information, you have the right to do so with your local Data Protection Authority in the country in which you reside.
Use of Site by Children
This site is not intended for use by children (under the age of 13 in the US or 16, if you live in the EEA). In light of Article 8 of the GDPR, we have a parental consent form in place that the holder of parental responsibility needs to fill if the child is under the age of 16 years. Under Article 8(2), we make “reasonable efforts” to verify that consent has been given or authorized by the holder of parental responsibility. We also want to let the child know that he or she has a right to withdraw that consent once they are competent to make such a decision.
Transfers and Processing of PII
Managing Communications With You.
If you no longer wish to receive emails from us on a going-forward basis, you may opt-out of receiving such emails by following the “unsubscribe” directions on the e-mails, or by going to your “member settings” page and un-checking the option to receive e-mails from us, or by calling us toll-free at (844) 663-8642 [8:00 am-5:00 pm (ET), Monday-Friday], or by sending an e-mail to email@example.com with the subject line “Unsubscribe.” We will endeavor to comply with your request as soon as reasonably practicable.
rareLife solutions, Inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
©2019 rareLife solutions, Inc. All rights reserved.
onevoice is a “positively-charged” community…and we want to provide a safe and powerful space for encouragement. We hope your taking on the mantle of being a ‘community member’ means you’re part of the solution. Bring your PMA (positive mental attitude), your realities and strength to onevoice – we need as much “good stuff” as you can muster…
We get it though. Everyone’s life has struggles and rough patches, and you’re welcome and invited to share those as well.
Posting or linking to material that is unlawful, obscene, derogatory, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by us in our sole discretion.
Please debate the topic, not the person. With three different treatment options to choose from—and much about Graves’ disease and autoimmunity that is not yet well understood—disagreements are bound to happen. Please be respectful and civil in stating your position, and do not use derogatory language or otherwise personally attack another member or Community Manager.
Please do not post negative comments using a physician or medical facility by name.
Posting links from questionable sources. We welcome information from sources committed to evidence-based medicine, such as: (a) well-established, peer-reviewed medical journals (eg, New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid);(b) established physician associations and their members (eg, American Association of Clinical Endocrinologists, American Thyroid Association, American Association of Endocrine Surgeons, American Society of Ophthalmic, Plastic, and Reconstructive Surgery); (c) well-known research hospitals (eg, Mayo Clinic, Cleveland Clinic, Harvard Health); (d) resources found in rareCurate, the professionally vetted library of trusted resources at oneGRAVESvoice; and (e) government entities (eg, U.S. Food and Drug Administration, National Institutes of Health). Other unverified references may be removed.
Posting or linking to material that is inaccurate. Many of our members are newly diagnosed, and the posting of inaccurate information can potentially cause great harm. Prior to posting about treatment options, medicines, autoimmunity, or any other topics, please check with one of the resources described above—in #2— and refrain from posting if you can’t verify the information.
Discussion of alternative therapies. Members may discuss complementary approaches that are practiced in addition to conventional medical therapy to promote general health and well-being, such as yoga, taichi, meditation, stress relief, etc. However, our social wall prohibits discussions that promote “alternative” therapies designed to replace conventional medical treatment. At this time, there are no proven safe and effective alternatives to the three available conventional treatment options for hyperthyroidism.
Discussion of supplements. Discussion of supplements is not permitted, *except* where there has been evidence-based research specific to Graves’ disease, thyroid eye disease, or autoimmune thyroid dysfunction (selenium, vitamin D, etc.).
Misrepresenting yourself out on our Sites as a healthcare professional or otherwise your licensure, specialty, certification, or other credential or information. Members are invited to share personal experiences and general information, but are not allowed to give medical advice. “Medical Advice” includes interpreting labs, making a diagnosis, making medication recommendations (dosing, type of med, etc.), or telling another member which treatment option they should select. These are all issues that need to be discussed with each patient’s own medical provider.
If you are a healthcare professional: attempting to treat or diagnose a patient or provide any other service or product to a patient on the Site is not permitted.
Disclosing in any part of the Site any personally identifiable information (eg, name, address, etc.), alone or in combination, about a former or current patient or client is not permitted.
Under certain circumstances, mostly dealing with Federal Laws about approved drug marketing and advertising, posting or linking to information about certain pharmaceutical products or medical devices is not permitted.
Participation or use of the site for any purpose in violation of applicable local, state, federal, or international laws is not permitted.
Posting or linking to content that infringes, misappropriates or violates the intellectual property or other proprietary rights of third parties or their privacy or publicity rights is not permitted.
Sending or posting viruses or other harmful computer code is not permitted.
Unconsented collecting or harvesting of information about others, including email addresses is not permitted.
Creating or using an account to impersonate another person is not permitted.
Creating or registering more than one name and/or e-mail address is not permitted.
Granting another person access to use your account to post or view comments is not permitted.
Posting excessively or “spamming,” including repeatedly posting the same comment or content, including advertisements, business solicitations, chain letters, or pyramid schemes is not permitted.
Participating on our Sites by persons under 16 years of age is not permitted.
Disrupting conversations and communications repeatedly or posting unrelated comments to a particular topic is not permitted. Please post your comment ONE time, however in cases where “resurfacing” a topic at the top of the social wall might be of value to the community, please use your reasonable discretion (for example, when an event or deadline might be approaching).
Using our Sites in a manner that prevents another person from participating in the Site or exposes us or any community member or our Collaborators to potential liability or detriment of any kind is not permitted.
Examples of Acceptable and Unacceptable Posts:
ACCEPTABLE:“My liver enzymes became elevated after taking PTU.” (Personal experience.)
ACCEPTABLE:“Methimazole is preferred over PTU, except in specific situations, such as patients who can’t tolerate other treatment options and during the first trimester of pregnancy.” (Verified information.)
ACCEPTABLE:“PTU comes with a higher risk of liver failure vs. methimazole.” (Verified information.)
UNACCEPTABLE:“PTU will damage your liver.” (Not accurate, as only 34 cases of severe liver failure were reported between 1969 and 2009; this is a small risk, but one that doctors should discuss.)
ACCEPTABLE:“My endocrinologist recommended that I take selenium.” (Personal experience, plus a supplement that has been studied specific to Graves’ disease.)
ACCEPTABLE:“My endocrinologist tests my Vitamin D levels. (Personal experience, plus a supplement that has been studied specific to thyroid autoimmunity.)
UNACCEPTABLE:“You should take 50,000 IU per day of Vitamin D.” (Medical advice.)
UNACCEPTABLE:“I take CBD Oil.” (Supplement not specific to Graves’/TED/thyroid autoimmunity.)
ACCEPTABLE:“I’ve started meditating [or doing yoga or practicing tai chi, etc.], and I am finding the practice very helpful.” (Personal experience.)
UNACCEPTABLE:“I started a meditation practice and stopped taking my meds.” (Alternative therapies.)
UNACCEPTABLE:“I am treating my Graves’ disease naturally.” (Alternative therapies.)
UNACCEPTABLE: “Methimazole is bad for you, so you should treat your Graves’ disease naturally.” (Inaccurate information, alternative therapies, medical advice.)
ACCEPTABLE:“I developed TED a year after doing RAI.” (Personal experience.)
ACCEPTABLE:“I had RAI, and my daughter was born with neonatal Graves’. (Personal experience.)
ACCEPTABLE:“For patients with moderate-to-severe or sight-threatening TED, medications or surgery are recommended over RAI.” (Verified information.)
UNACCEPTABLE “You should not do RAI.” (Medical advice.)
UNACCEPTABLE:“RAI will give you TED.” (Inaccurate information – but there *is* an increased risk, especially for those with high antibodies, high thyroid hormone levels, as well as with smokers.)
UNACCEPTABLE:“If you do RAI, your baby will be born with Graves.” (Inaccurate information—babies born to moms with Graves’ *can* have neonatal Graves’, but occurs in 1%–5% of pregnancies, and the risk can be assessed via antibody testing.)
ACCEPTABLE:“Consider seeking a second opinion.”
ACCEPTABLE:“Call your doctor’s office ASAP to confirm whether those instructions are correct.”
ACCEPTABLE: “Ask your doctor’s office for an updated set of labs.”
UNACCEPTABLE:“You should lower [or increase] your dose.” (Medical advice.)
UNACCEPTABLE:“Your doctor is a moron.” (Derogatory language.)
With respect to enforcing our Code of Conduct, we reserve the right to:
Record the conversations or content on our Site.
Investigate and take appropriate legal action against anyone who, in our sole discretion, is alleged to or violates the Terms or this Code of Conduct.
Remove offending content from our Sites, including any content that we determine, in our sole discretion, to be unlawful, obscene, derogatory, defamatory, threatening, harassing, abusive, slanderous, hateful, or that otherwise fails to conform to the Terms or this Code of Conduct.
Suspend or terminate the access of such violators to our Sites.
Report violations to the law enforcement authorities.
Terminate a user’s access to the Site if the user’s registration information and/or e-mail address is no longer valid.
Monitor, edit, or disclose any communication on the Site.
Edit or permanently remove any communication posted on the Site, even if not violative.
Take any other action that we deem necessary to protect the personal safety of community members or the public.
Although community members can remove, edit, or delete posts at any time, you should avoid posting personally identifiable or confidential information on our Sites (eg, full name, e-mail addresses, etc.). However, we recognize that there may be certain situations where personally identifiable information is posted despite our monitoring of the Sites. Accordingly, if you are unable to remove or delete such content (eg, posted by another community member), we may require you to pay an administrative fee to remove each posting.
***IMPORTANT NOTE*** If you are having a medical emergency or if you are in a crisis situation, please call 911 or contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). Our Community Managers are happy to answer general questions. However, this social wall does not have an “on call” administrator, and onevoice communities should NEVER be used as a substitute for proper medical care or medical advice. Always discuss any suggestions received with your own physician prior to making any changes to your own treatment regimen.
REPORTING A POST. Community Managers read every single post, and reply and comment on many, but we can’t cover the social wall 24/7. If a post that violates the Terms or Code of Conduct has slipped through the cracks, please send a detailed email to firstname.lastname@example.org.
PRIVATE MESSAGING. Private messaging in oneGRAVESvoice is not controlled or monitored in any way by rareLife solutions. Please use caution when giving out personal information to another member.
Last Updated: September 12, 2019
rareLife solutions, Inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
©2019 rareLife solutions, inc. All rights reserved.
The General Data Protection Regulation (GDPR) is the European data protection regulation adopted by the EU Commission to replace the EU Data Protection Directive, also known as Directive 95/46/EC. GDPR took effect on May 25th, 2018. The regulation expands upon and replaces the EU Data Protection and Privacy rules with a more comprehensive framework that dictates how the personal information of EU data subjects is used, stored, transmitted, protected, and codified. The GDPR applies to both individuals and businesses and regulates the way in which personal data of citizens in the European Union should be handled. The GDPR also requires that businesses share with the EU data subject how personal data is being handled; respond to certain data subject requests about that data; and handle such with proper security controls. The regulation also sets a standard for how that data is shared with other controllers and processors and sets guidelines for use or transfer of that information in countries with different laws and regulations regarding data use and transfer. A copy of the text of GDPR can be found here.
Our policies regarding data ownership and protection are focused on providing you with confidence that your data remains secure, and under your control. We have established a number of measures to ensure that customers and their data are treated in a manner consistent with privacy principles.
At rareLife, we are committed to ensuring the security and protection of the personal information that we process, and to provide a compliant and consistent approach to data protection. We have always had a robust and effective data protection program in place which complies with existing law and abides by the data protection principles. However, we recognize our obligations in updating and expanding this program to meet the demands of the GDPR and the Data Protection Bill.
We are dedicated to safeguarding the personal information under our remit and in developing a data protection regime that is effective, fit for purpose and demonstrates an understanding of, and appreciation for the GDPR. Our preparation and objectives for GDPR compliance have been summarized in this statement and include the development and implementation of new data protection roles, policies, procedures, controls and measures to ensure maximum and ongoing compliance.
How is rareLife Preparing for the GDPR
rareLife already has a consistent level of data protection and security across our organization, however it is our aim to be fully compliant with the GDPR.
Our preparation includes: –
- Information Audit – We are carrying out a company-wide information audit to identify and assess what personal information we hold, where it comes from, how and why it is processed and if and to whom it is disclosed. This will be an iterative process reviewed on an annual basis.
- Policies & Procedures – At rareLife, we are revising/implementing new data protection policies and procedures to meet the requirements and standards of the GDPR and any relevant data protection laws, including: –
- Data Retention & Erasure – We are working on having erasure procedures to meet the new ‘Right to Erasure’ obligation and are aware of when this and other data subject’s rights apply; along with any exemptions, response timeframes and notification responsibilities.
- Data Breaches – Our data breach procedures ensure that we have safeguards and measures in place to identify, assess, investigate and report any personal data breach at the earliest possible time. Our procedures are robust and have been disseminated to all employees, making them aware of the reporting lines and steps to follow.
- Data Transference – When rareLife collects a data subject’s personal information it avoids sharing that information with any vendor, third party, contractor or other type of outside service, unless either required by law or as part of our internal processes which sometimes include external providers. The information is stored in our systems and is not transferred outside of our network to any controllers or sub processors without explicit permission from our clients. rareLife never sells personal data to other companies, and to the extent it is ever shared, it is only to complete the purpose for which the data was acquired. All of our vendors must have procedures in place that protect any data that is shared with them.
- International Data Transfers & Third-Party Disclosures – Where rareLife stores or transfers personal information outside the EU, we have robust procedures and safeguarding measures in place to secure, encrypt and maintain the integrity of the data. Our procedures include a continual review of the countries with sufficient adequacy decisions, as well as provisions for binding corporate rules; standard data protection clauses or approved codes of conduct for those countries without. We carry out strict due diligence checks with all recipients of personal data to assess and verify that they have appropriate safeguards in place to protect the information, ensure enforceable data subject rights and have effective legal remedies for data subjects where applicable.
- Subject Access Request (SAR) – We are diligently working on our SAR procedures to accommodate the revised 30-day timeframe for providing the requested information and making this provision free of charge. Our new procedures detail how to verify the data subject, what steps to take for processing an access request, what exemptions apply and a suite of response templates to ensure that communications with data subjects are compliant, consistent and adequate.
- Legal Basis for Processing – We are reviewing all processing activities to identify the legal basis for processing and ensure that each basis is appropriate for the activity it relates to. Where applicable, we also maintain records of our processing activities, ensuring that our obligations under Article 30 of the GDPR and Schedule 1 of the Data Protection Bill are met.
- Privacy Notice/Policy – We have revised our Privacy Notice(s) to comply with the GDPR, ensuring that all individuals whose personal information we process have been informed of why we need it, how it is used, what their rights are, who the information is disclosed to and what safeguarding measures are in place to protect their information.
- Obtaining Consent – We have incorporated consent mechanisms for obtaining personal data, ensuring that individuals understand what they are providing, why and how we use it and giving clear, defined ways to consent to us processing their information. We have developed stringent processes for recording consent, making sure that we can evidence an affirmative opt-in, along with time and date records; and an easy to see and access way to withdraw consent at any time.
- Data Protection Impact Assessments (DPIA) –We are in the process of developing stringent procedures and assessment templates for carrying out impact assessments that comply fully with the GDPR’s Article 35 requirements. Our goal is to document processes that record each assessment, allow us to rate the risk posed by the processing activity and implement mitigating measures to reduce the risk posed to the data subject(s).
- Processor Agreements – where we use any third-party to process personal information on our behalf (i.e. Payroll, Recruitment, Hosting etc.), we have drafted compliant Processor Agreements and due diligence procedures to ensure that they (as well as we), meet and understand their/our GDPR obligations. These measures include initial and ongoing reviews of the service provided, the necessity of the processing activity, the technical and organizational measures in place and compliance with the GDPR.
- Special Categories Data – where we obtain and process any special category information, we do so in complete compliance with the Article 9 requirements and have high-level encryptions and protections on all such data. Special category data is only processed where necessary and is only processed where we have first identified the appropriate Article 9(2) basis or the Data Protection Bill Schedule 1 condition. Where we rely on consent for processing, this is explicit with the right to modify or remove consent being clearly signposted.
Data Subject Rights
In addition to the policies and procedures mentioned above that ensure individuals can enforce their data protection rights, we provide easy to access information via (our website, in the office, during induction etc.) of an individual’s right to access any personal information that rareLife processes about them and to request information about: –
- What personal data we hold about them
- The purposes of the processing
- The categories of personal data concerned
- The recipients to whom the personal data has/will be disclosed
- How long we intend to store their personal data for
- If we did not collect the data directly from them, information about the source
- The right to have incomplete or inaccurate data about them corrected or completed and the process for making this request
- The right to request erasure of personal data (where applicable) or to restrict processing in accordance with data protection laws, as well as to object to any direct marketing from us and to be informed about any automated decision-making that we use
- The right to lodge a complaint or seek judicial remedy and who to contact in such instances
Information Security & Technical and Organizational Measures
rareLife solutions takes the privacy and security of individuals and their personal information very seriously and take every reasonable measure and precaution to protect and secure the personal data that we process. We have robust information security policies and procedures in place to protect personal information such as SSL, access controls, password policy, encryptions and IT.
If you have any privacy-related questions/concerns, feel free to reach out to us. This same contact information can be used for questions related to data subject access requests, portability, erasure, etc. The contact information is as follows:
53 Water Street, 2nd Floor
South Norwalk CT 06854
Telephone (844) 663- 8642
We are constantly improving our policies and procedures to adhere to the standard and to go a step further to ensure all data we collect is properly protected.
We strive to be transparent with how we are collecting data regarding our customers and providing information to them on the data that we currently have. All our teams work to ensure that the data collected is only what is needed to provide the best service and utilizes data subjects’ information for the purpose of fulfilling those services only.
Last Updated: September 12, 2019
rareLife solutions, Inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
© 2019 rareLife solutions, inc. All rights reserved.
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