'R.A.R.E.' BOARD OF DIRECTORS AND ADVISORS ANNOUNCED
The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease. Rare disease affects more children and their families then AIDS and CANCER combined worldwide. The RARE Project, developed by various rare disease leaders, is an [...]
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 [...]
Rare Disease Caucus Announced
John Crowley announced the Rare Disease Caucus this week (link here). Leaders include Congressman Fred Upton and Congressman Joseph Crowley. This is exciting news for the rare disease community. Hoping great things come from this. // CC Recommend on Facebook Share on Linkedin share via Reddit Share with Stumblers Tweet about it Subscribe to the [...]
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 [...]