The APS Type 1 Foundation unites and empowers a global community to drive awareness, education, and groundbreaking research for APS Type 1, transforming lives affected by this rare autoimmune disorder.

Join The APS Type 1 (APECED) Registry

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!

Upcoming Events

  • APS Type 1 Foundation / Autoimmune Registry Webinar

    Join Todd, David and Robin as they present about The APS Type 1 Foundation’s journey at the upcoming webinar hosted by the Autoimmune Registry, Inc….

    Thursday, November 6, 2025 12:00 pm – 1:00 pm Virtual Webinar
    All Times are EST
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How We Help

We connect patients, families and doctors, support the work of scientists, and drive research forward.

Allyson, Jade and Geoffrey Smith

Stay Informed

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

Latest News

Welcome Amy Coan, our New Director of Community Relations

We are delighted to share another momentous occasion in our journey towards finding a cure for APS Type 1 and supporting those affected by this rare disease. Thanks to the generosity of our dedicated donors and supporters, The APS Type 1 Foundation is proud to announce that Amy Coan has joined us as Director of…

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Dave’s Research Corner: Congratulations to this Year’s Nobel Prize Winners in Physiology or Medicine

By: David Seyfert In 2022, at the Foundation’s inaugural Global Scientific Summit, Dr. Olle Kämpe (pictured in center photo) and I were discussing APS Type 1, the AIRE gene, and the critical importance the two played in our understanding of how the immune system works, specifically in regards to the concept known as “central tolerance.”…

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