Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Thursday, May 30, 2013 (11:00 a.m. – 1:00 p.m.) PhRMA Boardroom 950 F Street, Suite 300, Washington, D.C. Dial In: 1-800-875-3456 Verbal Passcode: VC20743 “Advancing Patient-Focused Drug Development and Benefit-Risk Assessment” We are pleased to announce the first in a series of informational briefings for stakeholders [...]
Twin brothers Forrest and Daniel Thiess had always wanted to serve in the U.S. military, but because of a rare illness, they can’t, WKRC reported. Both men, who live in Mason, Ohio, enlisted at the age of 17 – Forrest as a Marine, Daniel as [...]
Laurie Edwards, lecturer in health and science writing at Northeastern University and author of In the Kingdom of the Sick: A Social History of Chronic Illness in America, contributed this article to LiveScience’s Expert Voices: Op-Ed & Insights. After a lifetime of infections, hospitalizations and surgeries, a set of lab [...]
A new article appeared online at Cosmopolitan.com this morning featuring the story of the Global Genes Project’s Managing Editor, Ilana Jacqueline and her journey with two rare diseases. “These days it’s all about the sodium—eight bottles of Powerade, four bottles of water, and 4,000 more [...]
When I was a kid, having a support team for my disease meant having a parent who would fight my doctors for the “unnecessary” x-ray, the “it won’t make a difference” blood test, and the walk-in, 5:59 PM doctor’s appointment. But as an adult with [...]
Children’s National Medical Center Submitted by: Abby Bronson Currently, there are fewer than 400 approved treatments for 7000+ rare diseases, affecting more than 30 million Americans and more than double that worldwide. The challenges developers of therapies for rare diseases face are many and diverse, [...]
Attendees of the Daytona 500 will likely see more than just cars speeding around the track this weekend. Over 200,000 viewers will also play audience to a public service announcement about rare disease by the Global Genes Project. The 30 second clip is scheduled to [...]
