Parents, Kids and Rare Disease
When a rare disease is part of family life, expect a few extra challenges.
Video: On Patience and Hard-to-Diagnose Illnesses
Lynne Doebber, who was ill for decades before her diagnosis, offers advice to those still searching for answers.
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…
Short, sweet and once a week
Subscribe to get three stories each week about rare disease patients and biotech innovations.
Get Some Animated Advice
Our hero patient takes on issues like being undiagnosed, how to talk to the doctor and getting support from friends.
3 Lessons from a Patient Who Faced Her Dragon
Born with a rare, genetic disease, an HAE patient shared her story with CSL Behring staff in Kankakee, Illinois
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.