Experiences
In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
Cindy and Matthew
Osteogenesis Imperfecta (OI)“We refused to accept what we were being told, and I’m glad we did.”
Jonah
Glycogen Storage Disease Type Ia (GSDIa)“As I got older, I started learning how to listen to my body to know when I needed something.”
Tiffany and Wil
Duchenne Muscular Dystrophy (DMD)“In the beginning, we focused on what he was going to lose. Once we saw what he provided to those around him, Duchenne became just a part of who he is rather than his whole identity.”
LC-FAOD Community Voices
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“We may be kilometers apart, but I’m walking the same path as you.”
Taylor
Adrenoleukodystrophy (ALD)“For as long as I can remember, what motivated me to become an advocate was knowing that through advocacy and through helping others, I would be honoring my dad. It also helped me cope with my loss.”
Rachel
Partial Trisomy 9“After answering questions like, ‘Tell me something that you’re proud of. What are you enjoying about your child? What makes them laugh?’ parents were saying, ‘I am now seeing my child through a different lens. I am seeing how my child is developing. Not only in the realms of speech and language, but of character and personality.’”
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.”
Myriam and Victoria
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“We are parents, not doctors, but we fight for our children.”
Ann
Tumor-induced Osteomalacia (TIO)“It’s okay to say, ‘I’m having a really hard time,’ but within that to say, ‘Are there little things I could do to start to make it better?’”
Regina
Creatine Transporter Deficiency (CTD)“It takes a village to raise a kid, and in my experience with rare disease, it’s actually taken several villages.”
Mason
Angelman Syndrome (AS)“I’m incredibly hopeful for what the future holds and excited to brag about all of Mason’s future accomplishments.”
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.”
