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Get Involved

A total of 49 posts are filed under Get Involved
A Task for Tyler- Finding Treatments for SSADH and Hypotonia
Author: Jason Martin Life is always a task! But that task is amplified tenfold for someone like my son Tyler who suffers from an extremely… Continue Reading
Rare Leader: Annie Achee, President of the National Leiomyosarcoma Foundation 
The Basics Name: Annie Achee Title: President Organization:   National Leiomyosarcoma Foundation Disease focus:  Leiomyosarcomas are… Continue Reading
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
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
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