Experiences
In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
Gabrielle
Angelman syndrome (AS)“Angelman syndrome (AS) is part of your child, but it does not define who they are.”
Cynthia
Mucopolysaccharidosis Type VII (MPS VII)“We would like Cynthia to know that she is not the only one with a rare disease”
Sadie’s Story
Mucopolysaccharidosis type IIIA (also known as Sanfilippo syndrome type A)“Our family’s journey with Sadie has been filled with faith and hope for a cure”
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.”
