The Hypersomnia Foundation Board of Directors and volunteers worked for more than two years with physicians and researchers to create a hypersomnia-specific registry. That of hypersomnia patients is now ready for YOU to join, and the Hypersomnia Foundation will donate $50 to research for every person who completes the Hypersomnia Foundation Patient Registry Questionnaire during the month of September!
Why are registries so important?
Registries provide critical information, particularly about rare diseases. Uncovering that information makes a rare disease easier to study, increasing the probability that a treatment can be developed.
Typically, people with rare disorders are not geographically in the same place, making it difficult for scientists and medical professionals to gather information or samples from enough patients to study a rare disorder. However, a central registry helps to overcome that geography hurdle
Why would I take the time and use my limited energy to enroll in the registry and complete the questionnaires?
Visit the new Hypersomnia Foundation Registry page to complete the form.
If you are in the Atlanta-area & are interested in participating in a currently enrolling Idiopathic Hypersomnia study, visit our study landing page.