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A total of 62 posts are filed under Policy
President Obama: Medicine’s Next Step
HEALTH CARE is always personal. As science and technology have advanced, it’s become possible to make it personalized as well, giving us… Continue Reading
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Join the Everylife Foundation to Ensure the Rare Disease Community is Heard This Summer
During the summer recess, Members of Congress return to their home states to hear from constituents and attend community events.  Meeting… Continue Reading
Join Rare Disease Legislative Advocates This Summer to Make Your Voice Heard By Congress
Are you interested in learning more about the latest rare disease legislation and how it can help you and your community? How to talk with… Continue Reading
Get Involved with National Day of Advocacy on Tuesday, June 7th For 21st Century Cures
On June 7th, EveryLife Foundation for Rare Diseases and Research!America invite you… Continue Reading
Introducing the Path To Hope Campaign in Response to FDA Decision on Eteplirsen
The decision made by the FDA Advisory Committee does not only ​impact ​the affected Duchenne families,​ but ​the​ entire rare… Continue Reading
Regional Legislative Conferences to Help Advocates Prepare for In-District Lobby Days
Rare Disease Legislative Advocates (RDLA) will host three regional Legislative Conferences in late June to teach advocates about the… Continue Reading
Family Pushes Maryland Lawmakers to Fund Tuberous Sclerosis Research
If researchers can understand the rare disease that causes tumors to grow in Brynleigh Shillinger’s tiny heart, their knowledge may one… Continue Reading
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