Experiences
In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
Zoe’s Story
Mucopolysaccharidosis type IIIA (also known as Sanfilippo syndrome type A)Navigating through an Ultrarare Disease Diagnosis of Mucopolysaccharidosis type (MPS IIIA)
Michelle Fynan
Osteogenesis Imperfecta (OI)“My Journey with Osteogenesis Imperfecta (OI) also known as Brittle Bone Disease”
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.”
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.”
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.”
