As someone living with a rare disease, it’s important to “own” it. You are your best advocate, and you can surround yourself with people who will support you throughout your journey. You may not have expected this journey, but these resources may be able to help you take ownership of it and live your best life.
Rare Experiences
Hear stories from others who find hope and strength in owning their rare disease.
Tekeisha and Zoe
Chronic Recurrent Multifocal Osteomyelitis (CRMO)“To my other peers with a rare disease – you’re definitely not alone. There’s always someone that understands and is going through what you’re going through. There’s always someone you can talk to. Don’t keep it bottled up.”
Colin
Angelman Syndrome (AS)“While Colin continues to put in the work to be the best he can be, our community continues to fundraise and push research in a forward direction.”
