Caregivers
Video: From Patients to Caregivers: Thank You
Rare disease patients on why caregivers are so important.
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: Dealing With Stress and a Rare Disease
Patients share their strategies for managing stress while living with a rare conditio…
Video: How to Advocate for Access to Care
One mom’s tips on speaking up for children with a rare disease.
Video: A Father’s Bond
How John Vieke’s daughter helped him see his rare disease in a new light.
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.
VIDEO: What Kids Need to Know
See Machelle’s Promising Tips for helping a child be their own rare disease advocate.
8 Patients Share Songs That Inspire
From rock to hip-hop to show tunes, all genres make the playlist.
VIDEO: Managing Cold & Flu Season
One mom’s tips for keeping your family healthy.
VIDEO: When a Patient Grows Up
Mom Shonda’s advice for helping your child take charge of their rare disease.