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

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! 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

Foundation Grant Yields Two Scientific Publications

We are grateful to all the members of APS Type 1 Foundation for their continuous support and advice. We thank APS Type 1 Foundation’s families for their hard work to raise funds to support APS-1 research. Rachid Tazi-Ahnini and Mimoun Azzouz In 2019, the Foundation’s research grant was awarded to Rachid Tazi-Ahnini and Mimoun Azzouz…

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Forever in Blue Jean for Genes was a Super Diamond Success

Dear Friends, Family and all APS Type 1 Supporters, The words “Thank You” do not feel sufficient to express our sincere gratitude for your generous support of the APS Type 1 Foundation at “Forever in Blue Jeans for Genes” last month. Looking back on the event, we were overwhelmed to feel all the love in…

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