NEW! Please help us grow the registry with our new brochure. Share it with your care team.
The APS Type 1 (APECED) Registry is a secure database that provides a way to collect information from many different people with APS Type 1 and to update information over time as conditions and experiences change. The surveys are intended to gather information about many different aspects of APS Type 1, including details about diagnosis, prognosis, treatments, which disorders the patient has and when they were acquired, medications, hospitalizations and quality of life. Help us drive research!
If you’re in the area, we invite you to come to Capitol Hill for the Autoimmune Association’s Congressional Briefing. Our Medical Advisory Committee member Dr….
Wednesday, July 22, 2026 4:00 pm – 5:00 pm 2044 Rayburn BuildingWe connect patients, families and doctors, support the work of scientists, and drive research forward.
The APS Type 1 Foundation brings the most up to date research to our community. Join our symposia, and sign-up for our newsletter and registry to keep abreast of the latest developments in research and management of this complex disease.
“The information we received at the 2019 Symposium was invaluable—as are the new friends we made.”
— Jade Smith, pictured here with Allyson & Geoffrey
Thank you for joining us for our June 2026 HUDDLE. In case you missed it, click the button below to see the slides from the meeting. Following these slides, we had a terrific discussion about the NIH natural history study, school resources for adrenal insufficiency, and more. We look forward to seeing more folks when…
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The APS Type 1 Foundation is proud to partner with Raregivers™, an organization dedicated to supporting individuals and families impacted by rare diseases. Raregivers™ was created with a simple but powerful mission: to ensure that patients, caregivers, and advocates never feel alone in their journey. By fostering connection, education, and emotional support, Raregivers™ helps build…
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