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!
Join us for our final HUDDLE of 2026–Our HOLIDAY HUDDLE! We can’t think of a better way to kick off the Holidays than being together…
Sunday, December 13, 2026 1:00 pm – 2:00 pm Zoom–Link will be emailed to all registrantsThe APS Type 1 Foundation is delighted to announce that our 7th International Symposium on APS Type 1 will be held July 15–17, 2027, in…
Thursday, July 15, 2027 – Saturday, July 17, 2027 Exact Location TBDWe 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
A new open-access paper in nature communications, published August 1, 2026, reports on two people with APECED who were treated with ruxolitinib as autoimmune endocrine dysfunction was developing. Dr. Lionakis and his team of investigators reported that JAK1/2 inhibition with ruxolitinib halted progression and reversed biochemical and clinical abnormalities associated with evolving hypoparathyroidism in one…
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The APS Type 1 Foundation is delighted to announce that our 7th International Symposium on APS Type 1 will be held July 15–17, 2027, in Baltimore, Maryland. Our international symposia bring together people and families living with APS Type 1/APECED, clinicians, scientists, and other experts for education, research updates, practical information, and community connection. Baltimore…
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