In the company of
guardians, givers, and the greatest of groundbreakers, activists, advocates and the altogether awe-inspiring. In the company of rare.
We are proud to share community stories, which bring to life the daily challenges, perseverance, and bravery of people living with rare diseases.
Gabrielle
Angelman syndrome (AS)“Angelman syndrome (AS) is part of your child, but it does not define who they are.”
Cynthia
Mucopolysaccharidosis Type VII (MPS VII)“We would like Cynthia to know that she is not the only one with a rare disease”
Get Inspired
Connect with the community and find your #RareStrength.
“One thing that I’ve learned—keep pushing until you can get a diagnosis. You have to keep moving no matter what.”
Ann
“Find your people. Reach out, jump in, don’t be afraid to ask questions. There are a lot of people you can learn from.”
Kyle
“To my peers with a rare disease, you are definitely not alone. There’s always someone you can talk to. Don’t keep it bottled up.”
Zoe
The Rare Journey
Every rare journey is unique, but there are many experiences that people may have in common. The Rare Journey Resource is designed to provide access to information for many of the common phases of the rare journey and empower you reach out and get involved.
Community Conversations
Listen to a panel of incredible advocates moderated by The Two Disabled Dudes.
