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Rare Across America
Happenings

Rare Across America

Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from August 3rd to September 7th, 2020. The Rare Disease Legislative Advocates (RDLA) team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

No prior advocacy experience is necessary.

Registration for this event and all RDLA events are free for rare disease advocates.

 

When:
August 3, 2020 - September 7, 2020

Where:
The local offices of your Members of Congress.

Aug 3, 2020
U.S. Physician Survey Illustrates The Devastating Impact Of Thyroid Eye Disease On Patient Quality Of Life
Spotlight

U.S. Physician Survey Illustrates the Devastating Impact of Thyroid Eye Disease on Patient Quality of Life

Horizon Therapeutics plc today announced results of a U.S. physician survey showing that endocrinologists and ophthalmologists perceive Thyroid Eye Disease (TED) to have a significant burden on their patients’ quality of life (QOL). TED is a serious, progressive and vision-threatening rare autoimmune disease associated with proptosis (eye bulging), diplopia (double vision), blurred vision, pain, inflammation and facial disfigurement. The analysis was accepted as a poster presentation at the American Association of Clinical Endocrinologists (AACE) 29th Annual Scientific & Clinical Congress and was published in a special supplement of Endocrine Practice.

“This analysis shows that physicians are acutely aware of the significant burden TED has on their patients, including not only the painful eye symptoms, but also the major impact on mental health, social interactions, driving and employment,” said Yao Wang M.D., neuro-ophthalmology and oculoplastics specialist, Cedars-Sinai Medical Center.

May 11, 2020
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