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.

So we are providing onevoice features and access to other community members with your agreement (and everyone else’s) to “play nice”…which means stuff like the following actions could be considered by rareLife solutions as a material breach of the Terms of Use and get you a stern but polite message by our ever present Community Managers, who will do their best to explain how to make your post compliant with our positively charged community…(please consider what they recommend because even though we consider it an action of last resort, we may have to ask you to leave or eject you from the Site if you’re not willing to adjust your posting or behavior).

1. 1. 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.

1. 1. 1. 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.

      2. Please do not post negative comments using a physician or medical facility by name.

1. 2. 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.

   3. 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.

   4. 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.

   5. 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.).

   6. 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.

   7. 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.

   8. 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.

   9. 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.

   10. Participation or use of the site for any purpose in violation of applicable local, state, federal, or international laws is not permitted.

   11. 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.

   12. Sending or posting viruses or other harmful computer code is not permitted.

   13. Unconsented collecting or harvesting of information about others, including email addresses is not permitted.

   14. Creating or using an account to impersonate another person is not permitted.

   15. Creating or registering more than one name and/or e-mail address is not permitted.

   16. Granting another person access to use your account to post or view comments is not permitted.

   17. Posting excessively or “spamming,” including repeatedly posting the same comment or content, including advertisements, business solicitations, chain letters, or pyramid schemes is not permitted.

   18. Participating on our Sites by persons under 16 years of age is not permitted.

   19. 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).

   20. 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:

1. 1. Record the conversations or content on our Site.

   2. 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.

   3. 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.

   4. Suspend or terminate the access of such violators to our Sites.

   5. Report violations to the law enforcement authorities.

   6. Terminate a user’s access to the Site if the user’s registration information and/or e-mail address is no longer valid.

   7. Monitor, edit, or disclose any communication on the Site.

   8. Edit or permanently remove any communication posted on the Site, even if not violative.

   9. 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.

ADDITIONAL INFORMATION:

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 [email protected].

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.
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Westport, CT 06880
[email protected]
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