News
- Pfizer Announces FDA Approval of ELELYSO™ for Type 1 Gaucher Disease and Personal Support Program For Patients: On May 1, 2012, Pfizer announced the FDA approval of ELELYSO...
- ACTION ALERT - Accelerated Approval to treatments for rare disease patients!: The RARE Project has been working with Rare Disease Legi...
- CALL TO ACTION !!: Rare Disease Language included in House draft PDUFA Bill ...
- The Grassroots Movement Behind Ultra and Fast: Join the Movement!: A Guest Blog by Julia Jenkins: Director of Gove...
- It's a Wrap - World RARE Disease Day 2012: GLOBAL GENES PROJECT E-NEWS DANA POINT, Calif. – ...
Family Life
- FOR IMMEDIATE RELEASE - HR 5651, the Food and Drug Administration Reform Act of 2012: FOR IMMEDIATE RELEASE House FDA User Fee Bill Will Unlock...
- Michelle Obama's Video Challenge: Vote for Prader-Willi Syndrome and Rare Disease: Taking Rare Disease To the White House The Foundation fo...
- 52 New FDA Compassionate Allowances Announced: On April 11, FDA Commissioner Astrue announced at the World ...
- Policy Update - PDUFA: We're continuing to work on improving PDUFA to allow the FDA...
- ACTION ALERT - Accelerated Approval to treatments for rare disease patients!: The RARE Project has been working with Rare Disease Legi...
Advocacy/Policy
- Announcing RARE Project's Newest Program: RARE Meetups and Local Leaders Program We are ve...
- What is Loss?: What is Loss? By R.A.R.E. Team Guest Blogger: Vanessa L...
- RARE Patient Stories - 'Meet Reed!': Meet Reed! In January of 2011, we learned that ...
- RARE Patient Stories - 'Meet Connor!': 'Meet Connor!' Connor is a typical 5 year old boy, except...
- Christopher - Growing up with Hunter Syndrome: Raising Awareness for MPS II When he was 6...