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Get Involved

A total of 48 posts are filed under Get Involved
My 10 year old son won the genetic lottery and today is his day! (A STORY FOR RARE DISEASE DAY)
The Lottery, MegaMillions, Powerball! Everyone dreams of hitting that enormous mega jackpot! Admit it, we have all thought about the… Continue Reading
Upcoming Events on the Rare Calendar
January 25 to March 31 The Alagille Syndrome Alliance, a nonprofit organization dedicated to furthering awareness and understanding of… Continue Reading
2017 Rare Artist Contest Now Accepting Entries – Submit Your Work Today!
The EveryLife Foundation for Rare Diseases is excited to announce that the ninth annual Rare Artist contest is now open for submissions.… Continue Reading
Sanofi Genzyme Announces Launch of 7th Annual Patient Advocacy Leadership Awards
Sanofi Genzyme is pleased to announce the launch of the 7th annual Patient Advocacy Leadership (PAL) awards! The PAL awards are a global… Continue Reading
Action Alert! Urge your Legislator to Support the OPEN ACT!
From RDLA and EveryLife Foundation As you may already know, we are working to pass legislation called the OPEN ACT (Orphan Product… Continue Reading
RDLA’s May Legislative Webinar and In-Person Meeting
Wednesday, May 17th, 2017  12:00 – 1:00 pm ET 440 First Street Northwest, Suite 430 Washington, DC 20001   Agenda:  NIH and FDA Funding… Continue Reading
Invitae Creating Patient Insights Network (PIN) to Help Share Health Data
Last week, Invitae announced the launch of the Invitae Patient Insights Network℠ (PIN), an opt-in, patient-centered network designed to… Continue Reading
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