Parents, Kids and Rare Disease
When a rare disease is part of family life, expect a few extra challenges.
Audrey Hepburn - an Icon for Rare Disease Advocacy
EURORDIS-Rare Diseases Europe bestows posthumous honor on the actress and humanitarian; Hepburn’s son is an advocate for rare…
Get Some Animated Advice
Our hero patient takes on issues like being undiagnosed, how to talk to the doctor and getting support from friends.
Rare As One
The Chan-Zuckerberg Foundation – yes, that Zuckerberg – awards $13.5 million in grants to rare disease patient groups.
When To Tell That Special Someone?
Those who live with rare and serious diseases wonder when to share their health status.
Take Our Rare Disease Day Quiz
Test your knowledge about this special day acknowledged around the world.
Video: How to Find the Right Diagnosis
Rare diseases are often difficult to diagnose. We asked several patients for advice.
Family Provides Motivation for Donation
Donor looks to loved one’s illness as a reason to donate in Plasma Protein Therapeutics Association video.
What Is the J.P Morgan Healthcare Conference?
This mega-meeting in San Francisco focuses on biotech deals and investors, but rare disease advocates are also seizing the mo…