Extraordinary! A Book for Kids with Rare Diseases

We chatted with mother-and-son team Evren and Kara Ayik, authors of a new book that’s for, and about, kids who have rare dise…

CSL Plasma App Gets an Upgrade

Donors will find an updated news section, info for users who have a disability and tips on the referral program.

Employee Wins USA TODAY Animalkind Award

Allen and his wife established a dog hospice that teaches lessons, changes lives and warms hearts.

Increasing Life Span and Health Span

By some measures, Americans are getting less healthy even amid medical advances. Can a big U.S. data project explain why and …

Magical Baby Photos

After a year on pause, photographer Angela Forker continues her Precious Babies Project, featuring young patients who have ra…

Patient Focus in Clinical Trials

What do participants want from a clinical research study? We asked and learned that it’s the “3 Cs” – customization, compassi…

U.N. Recognizes Rare Disease Patients

Supporters hope a newly adopted U.N. resolution will make rare disease patients more visible and ensure they have access to c…

What Makes a Disease 'Rare?'

Definitions vary but the challenges are the same: a long wait for a diagnosis, too few treatments and the need to connect wit…