9.6.2016 Don’t miss your LAST CHANCE to register for our 5th Annual RARE Patient Advocacy Summit! Using feedback from patient advocates, board… Continue Reading
8.11.2016 Global Genes, the leading global advocacy non-profit organization for patients and families fighting rare and genetic diseases, today… Continue Reading
7.19.2016 Over 350 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts… Continue Reading
Global Genes Hosts 5th Annual Rare Patient Advocacy Summit and Tribute to Champions of Hope, Presented by PRA Health Sciences.
6.20.2016 September 22 to 24, 2016, Hyatt Regency Resort and Spa, Huntington Beach, California. The annual blue carpet event following the two-day… Continue Reading
4.30.2016 The decision made by the FDA Advisory Committee does not only impact the affected Duchenne families, but the entire rare… Continue Reading
4.6.2016 What’s taking so long? Is anyone working on answers? How can I get involved? How can I be heard? If drug trials are successful, when am I… Continue Reading
4.3.2016 This year’s second annual Denim Dash has so far pulled in over $55,000 in donations from across the globe! Patients, parents, friends and… Continue Reading