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

Upcoming Events

  • 2023 Rare Disease Day

    Please join us in the first annual “Walk 1000 miles for APS Type 1” virtual trek! The goal of this two week event is to…

    Monday, February 13, 2023 - Tuesday, February 28, 2023 Online
  • The 5th International Symposium on APS Type 1

    Join us in Washington DC in July 2023 for our 5th International Symposium on APS Type 1!

    Friday, July 7, 2023 - Saturday, July 8, 2023 Melrose Georgetown Hotel
    Washington DC
View All Upcoming Events ›

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

27 Miles Fundraiser Update

In honour of James Read’s life and in celebration of his birthday on December 27th, his friends in the UK walked 27 miles in one day. They had almost 30 people to start, meeting by the tree of life outside Lincoln Cathedral, where James was a chorister. Friends, family and teachers joined part way for…

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Walk 1000 miles for APS Type 1

Thank you for interest in the 2023 “Walk 1000 miles for APS Type 1” virtual trek. Who: Anyone in the APS Type 1 community and their supporters! One of the best features of our online race platform is that participants can log any type of activity. You can run, walk, bike, swim, dance, circuit train,…

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