GLOBAL GENES PROJECT – NEWS AND UPDATES
Global Genes Project E-News It’s a Wrap – Rare Disease Day 2011. DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. [...]
Rare Disease Day 2011: Research, Action and Impact
Updates from MarbleRoad for Rare Disease Day 2011, including events, publications, and a quick shout-out for those fighting rare kidney disease.
Improve FDA’s Rare Disease Review Process
The Jewish Daily – FORWARD Opinion By Jonathan Jacoby The Jewish community has long been a leader in supporting medical research and education efforts, especially with regard to those diseases that disproportionately afflict people of Ashkenazi Jewish descent. Creating coalitions with other patient advocates in the rare disease community would give American Jews an opportunity [...]
Announcing Global Genes Project!!! Wear Jeans, help sick kids!
Finally the rare disease community has their ‘pink ribbon’! With a community of 100 million strong in the US and equal those numbers in the EU this community is deserving of the same energy, efforts, attention and support as some of the big individual diseases like AIDS and Breast Cancer. We live in a time [...]