What the FDA’s New Social Media Guidance Means for Marketers
Little by little, and in no particular order, the FDA is rolling…
Rare Diseases and the Promise of Genetics [VIDEO]
Sharon Moalem, MD, PhD, is not just an award-winning researcher and physician,…
From Patient Partner to Patient Leader
Remember when patients were passive receivers of care and the only thing…
Why Transparency Matters More Than Ever
Relationships are important in rare—and so are reputations. Rare disease communities are…
What Patient Centricity Means to Marketers
In 2011, when Lilly and Disney teamed up to create a series…
Hacking the Diagnosis of Rare Diseases
Ed Fennell is a problem solver. After spending 35 years running a…
Creating Hope for Undiagnosed Patients
Most rare disease patients spend a good portion of their lives coping…
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…
Diagnosis Is a Cause Everyone Can Get Behind
One of the most moving moments (and there were many of them)…
