News
- RARE DISEASE LOBBY DAY - ADVOCATES WELCOME: Are you an advocate for Rare Disease? Are you interes...
- The RARE List™ - You Must See it to Believe it!: 7,000 Different Rare Diseases and Disorders Comprise 65 Page...
- Rare Disease Bloggers Unite With "Blog Hop" to Raise Awareness for World Rare Disease Day 2012 and 1 Million For Rare™ Campaign: PRESS RELEASE Jan. 30, 2012, 5:29 p.m. EST Rare ...
- Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome: Charities Unite Worldwide to Fund Research into Reversibilit...
- ACTION ALERT - World RARE Disease Day at National Institute of Health: Rare Disease Day at NIH (RDD@NIH) On February 29, 2012...
Family Life
- PATIENT STORIES OF HOPE AND INSPIRATION : 'MEET THE SPOONER FAMILY!' Rick and Cristyn Spooner of ...
- RARE DISEASE LOBBY DAY - ADVOCATES WELCOME: Are you an advocate for Rare Disease? Are you interes...
- RARE Disease Events: Don't miss these other great Rare Disease Day events i...
- RARE Disease Lobby Day: WHEN: February 28, 2012 WHERE: Washington...
- Managed Named or Compassionate Access to Drugs Still in Clinical Trial: I am participating in an interview tomorrow on early access ...
Advocacy/Policy
- PATIENT STORIES OF HOPE AND INSPIRATION : 'MEET THE SPOONER FAMILY!' Rick and Cristyn Spooner of ...
- RARE DISEASE LOBBY DAY - ADVOCATES WELCOME: Are you an advocate for Rare Disease? Are you interes...
- RARE Disease Events: Don't miss these other great Rare Disease Day events i...
- Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children's Project: Brad Paisley sings new song written by Joe Kind...
- Clinical Development Program in LAL Deficiency: LAL Deficiency, a lysosomal storage disorder, has early and ...