Thank you for your interest in this contact registry. The purpose of this contact registry is to provide an opportunity for individuals with a specific rare disease or disorder to register themselves to receive information about studies conducted by the Rare Diseases Clinical Research Network. You may also learn about progress being made towards treatment advances by researchers who specialize in your disease or disorder.
By joining the Contact Registry, you will be asked to provide information about you (or your child) and how you can be contacted. The registry will use that information to contact individuals who might qualify for participation in a research study. We may also use your contact information in order to communicate treatment information and sources.
You will also be given the option of sharing the information you enter into the contact registry directly with study doctors and research staff via email.
Because of their rarity, researchers often have difficulty finding enough patients to study these diseases in order to understand and cure them.