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.
Levi
Duchenne Muscular Dystrophy (DMD)“I have Duchenne, my muscles are different, but I am a lot more than my Duchenne.”
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.”
