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Join the Contact Registry

What is the Registry? Learn More...

How does the Contact Registry Work?

After you have read and agreed to the authorization, the Contact Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

Join the Contact Registry for a disease by clicking on the disease name below:

Register by mail: Download the contact registry paper form

Link to the Department of Health and Human Services Web SiteLink to the National Institutes of Health Web SiteOffice of Rare Diseases ResearchNational Institute of Neurological Disorders and Stroke Web Site