Today, NORD issued a press release regarding how registries and natural history studies, like ours, are keys to understanding rare conditions and can help accelerate advancements that uncover new treatments. We are excited to be part of this group of rare disease foundations and thank NORD for its continued support of The APS Type 1…
Read MoreThe 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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