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

How We Help

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

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

Global Genes Recognizes Todd Talarico as a RARE LEADER

We are pleased to share today that Global Genes recognizes APS Type 1 Foundation President, Todd Talarico, as a Rare Leader. Please click here to read about our foundation through Todd’s lens. We are thrilled to have Global Genes recognize our foundation and our fearless leader. We remain committed to our mission of increasing awareness,…

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NORD applauds critical health care reforms

NORD applauds critical health care reforms   NORD and 18 other patient organizations representing millions of people with pre-existing conditions issued a statement on June 30 in support of specific patient protections and affordability provisions included in the Patient Protection and Affordable Care Enhancement Act, which passed in the House of Representatives on June 29….

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