Addressing the Needs of Family Caregivers of Loved Ones with Rare Diseases
More relief for caregivers of those with rare diseases is now available.…
Rare Diseases and the Promise of Genetics [VIDEO]
Sharon Moalem, MD, PhD, is not just an award-winning researcher and physician,…
How Technology Will Improve the Future for Rare Diseases
Our collaboration with Global Genes and Sharon Moalem, MD, PhD at H@cking…
Why Transparency Matters More Than Ever
Relationships are important in rare—and so are reputations. Rare disease communities are…
Why Rare Disease Caregivers Inspire Me
If you want to know the heights of love, compassion, determination, and…
New Resources That Will Help Speed Diagnosis of Rare Diseases
The rare community has made huge strides in the 30 years that…
Geolocating a Cure for a Rare Disease
U.S. Senator Tom Udall of New Mexico has introduced a bill that…
Advocacy Group Helped Fund New FDA-Approved Orphan Drug
I like to say rare diseases are different. One key way is…
Highlights from the World Orphan Drug Congress 2013
A key theme of the World Orphan Drug Congress 2013 was the…
A Chat With Rare Disease Advocate Ed Fennell
Last week I had a fascinating phone conversation with rare disease advocate,…