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Get Involved

A total of 41 posts are filed under Get Involved
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
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
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
RDLA’s March Legislative Webinar/Conference
RDLA’s March Legislative Webinar & Conference Call Wednesday, March 15th: 1:00 pm to 2:00 pm EST Once a month RDLA convenes in person… Continue Reading
Rare Disease Research: The National Institutes of Health Supports Science that Saves Lives
March 9, 2017 | Noon – 1:30 PM Longworth House Office Building, Room 1310 In cooperation with Congressmen Scott Peters (CA-52) and Leonard… Continue Reading
Global Genes® and Festival of Children Foundation Announce First RARE Carousel of Possible Dreams
Global Genes, a leading rare disease patient advocacy organization, and Festival of Children Foundation are proud to announce the first-ever… Continue Reading
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