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.
Amanda
Wilson Disease (WD)“Wilson disease affects many parts of my daily life because you literally have no idea what you are going to wake up to the next morning.”
Reyna
CDKL5 Deficiency Disorder (CDD)“This disorder is always two steps ahead of us so we take it one day at a time.”
Levi
Duchenne Muscular Dystrophy (DMD)“I have Duchenne, my muscles are different, but I am a lot more than my Duchenne.”
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.
