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Get Involved

A total of 44 posts are filed under Get Involved
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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RDLA’s April Legislative Webinar/Conference Call
Wednesday, April 19th: 2:30 pm to 3:30 pm EST  440 First Street Northwest, Lobby-level Conference Room   Washington, DC 20001   … Continue Reading
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Register Now for the Cell and Gene Exchange!
Please join Global Genes in attending the inaugural Cell & Gene Exchange May 22nd and 23rd co-produced by Alliance Regenerative Medicine… Continue Reading
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Call to Action: Endorsing Scott Gottlieb MD as Commissioner of Food and Drug Administration
Global Genes is joining the rare community to support Dr. Scott Gottlieb’s nomination to serve as Commissioner of Food and Drug… Continue Reading
A Family Travels the World for Diagnosis of Rare Skeletal Dysplasia for Two Sons
By Nenna Janseen In 2008, Adam and I were planning to start a family. At the time, we were plagued by uncertainty and fear. Dozens of… Continue Reading
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