The APS Type 1 Foundation supports education, awareness, and fundraising for critical research.

Join The APS Type 1 (APECED) Registry

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! Register Now

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How We Help

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

Stay Informed

Allyson, Jade and Geoffrey Smith

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

The NIH Needs Our Help!

The APS Type 1 Foundation continues to work closely with Dr. Lionakis and his team at the National Institutes of Health (NIH) to bring forward important information in support of the health and well-being of our community.   In collaboration with researchers around the globe, the NIH continues to evaluate of the impact of Covid-19 with…

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Join the EveryLife Foundation for Rare Diseases for RARE Disease Week on Capitol Hill, June 14th-22nd (Virtual)

The APS Type 1 Foundation is pleased to share this advocacy opportunity with you. Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. While the EveryLife Foundation for Rare Diseases had…

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