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.
Reyna
CDKL5 Deficiency Disorder (CDD)“This disorder is always two steps ahead of us so we take it one day at a time.”
Michelle and Jake
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“It’s a very complicated disease, and it can be frustrating, but I couldn’t ask for a child to deal with this any better.”
