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Get Involved

A total of 39 posts are filed under Get Involved
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
Rare Disease Day Roundup: What’s Happening in Your Neighborhood?
Cheryl Gavin is hosting Supercuts Supports Rare Disease Day. Over 80 local Supercuts in Massachusetts and New Hampshire will be wearing… Continue Reading
Alagille Syndrome Alliance Accepting Applications for Alaina Kaitlyn Hahn Celebratory Scholarship
The Alagille Syndrome Alliance (ALGSA), a nonprofit organization dedicated to furthering awareness and understanding of Alagille Syndrome… Continue Reading
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