There are more than 7,000 rare diseases registered with the National Organization for Rare Disorders and while each is unique, there are many commonalities that unite rare condition patients, families, caregivers and supporters.
In the spirit of raising awareness of rare conditions, we would like to share your unique story.
Your experiences with treatment, giving and receiving support, and living with a rare condition have the power to help others.
Take our survey to share your experiences.
You may even qualify for a special project if your survey answers meet our specific criteria!Get Started