You’ve gotten a rare disease diagnosis. Now what? There is so much to learn and do that it can be overwhelming. Take your time to prioritize your needs and remember that there is support out there and a community of people who are ready to help because they’ve been where you are now. Below are links to several resources that may help you navigate this complex and uncertain time.
Rare Experiences
You are not alone. Read about others who are living with a rare disease diagnosis.
Zoe’s Story
Mucopolysaccharidosis type IIIA (also known as Sanfilippo syndrome type A)Navigating through an Ultrarare Disease Diagnosis of Mucopolysaccharidosis type (MPS IIIA)
Reyna
CDKL5 Deficiency Disorder (CDD)“This disorder is always two steps ahead of us so we take it one day at a time.”
