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Rare Community

A total of 487 posts are filed under Rare Community
Spark Therapeutics Launches Initiative to Improve Access to Genetic Testing for Inherited Retinal Diseases
Spark Therapeutics (NASDAQ: ONCE) will provide physicians and eligible patients access to genetic testing and counseling for more than 30… Continue Reading
Join RDLA for Their October Legislative Webinar/Conference Call
Wednesday, October 26th: 1:00 pm to 2:00 pm EST Agenda: Lymphedema Treatment Act:Patricia Egan, Interim Executive Director & CEO, National… Continue Reading
EveryLife Community Congress: New Agenda
Get the inside-track on our legislative initiatives and learn about the activities each working group is undertaking. This is your… Continue Reading
CureDuchenne Cares Hosts Inaugural Family Summit This October
The inaugural CureDuchenne Cares Family Summit, a complimentary educational seminar for families who have loved ones with Duchenne muscular… Continue Reading
Rare Disease Report: Monty Python Alum Terry Jones has Rare Disease
Terry Jones of Monty Python’s Flying Circus has been diagnosed with Primary Progressive Aphasia (PPA), a type of Frontotemporal Dementia.… Continue Reading
Join Congenital Hyperinsulinism International for the Sugar Shindig, 10/8
Join Congenital Hyperinsulinism International during their Sugar Shindig this Saturday, October 8th 2016. This year’s event honors Dr.… Continue Reading
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Home Depot Employees Create Innovative Walker for Boy with Norrie Disease
All of Jessica Johnson’s doubts about her recent move from Oregon to Texas washed away the minute a few kind Home Depot employees entered… Continue Reading

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