Watch Krissy's Story: From Caregiver to Advocate
After a harrowing journey to a hemophilia diagnosis for her son, Krissy is stepping up to help others.
Putting Caregivers First
A top U.S. nurse offers self-care advice and shares her family’s journey caring for a granddaughter with a rare disease.
Sickle Cell Disease Caregivers' Guide
Caregivers play a multifaceted role. Here’s how to support a loved one who has this inherited blood disorder.
Santonio Holmes Tackles Sickle Cell Disease
The Steeler legend - and Dad to a son with the disease - visits our podcast to talk about his foundation that helps families …
A Big Thank You to Caregivers
Patients say they could not do it without the family and friends in their support systems.
Video: From Patients to Caregivers: Thank You
November is National Family Caregivers Month in the U.S. See some of our rare disease patients tell why caregivers are so imp…
Video: Raising Kids and Managing a Rare Disease
Our patients share what it’s like to be a parent living with a rare condition.
Video: How to Advocate for Access to Care
One mom’s tips on speaking up for children with a rare disease.
Happy Mother's Day From Rare Disease Patients
Video: Moms living with rare diseases offer Mother's Day wishes.
VIDEO: Ensuring Access to Care for Kids
One mom’s Promising Tips for making sure children get what they need to stay healthy
The Power of Parents
When a child has a rare disease, moms and dads dedicate themselves to the cause.