You’re a fighter.
Receiving a diagnosis can be overwhelming.
But, you don’t have to do this alone. We’re here to help!
You will find that we have provided some great next steps for you. Please contact us directly if you need additional support.
Step 2:
Join Citizen Health
This is critical step - Sign up for Citizen Health Rare Patient Network!
Per the Food and Drug Administration (FDA or Agency), “natural history studies can be used to support the development of safe and effective drugs and biological products for rare diseases. A natural history study collects information about the natural history of a disease in the absence of an intervention…[and] Although knowledge of a disease's natural history can benefit drug development for many disorders and conditions, natural history information is usually not available or is incomplete for most rare diseases; therefore, natural history information is particularly needed for these diseases.”
Because of this great need, we are partnering with Citizen Health to support our natural history.
Citizen Health is a free service that helps patients get more out of their health records. Their platform enables patients to find better treatment options and allows them the opportunity to advance the research for cures.
Citizen Health is and always will be 100% free to patients.
Join Citizen Health today!
Step 3: Get in touch!
Still have more questions? Throw all your questions our way!
Don’t see a resource that you’re looking for? Have more questions about your diagnosis? Can we put you at ease about an upcoming appointment?
Are you a medical or research professional looking to partner with us?
Let’s learn, share and connect!