Finding a diagnosis can be challenging. It can take several years for people living with a rare condition. If you feel like something is wrong, but don’t know where to start, or you’ve been through several doctors and don’t know what to do next, these resources may be able to help guide you on the path to answers and care.
Rare Experiences
You are not alone. Read other rare experiences and how patients and families have struggled and advocated to secure a diagnosis.
Gabrielle
Angelman syndrome (AS)“Angelman syndrome (AS) is part of your child, but it does not define who they are.”
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”
