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

  • Rare Disease Day 2024

    On February 29th, please join us in raising awareness about APS Type 1 as we celebrate the Rare Disease Day! Post messages, photos, videos, or whatever you think best shares…

    Thursday, February 29, 2024 Around the Globe
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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

2024 Rare Disease Day: How You Can Make A Difference!

On February 29th, please join us in raising awareness about APS Type 1 as we celebrate the Rare Disease Day! Post messages, photos, videos, or whatever you think best shares your story on social media and add the hashtag #APS1WeAreRare. February 29th is the International Rare Disease Day. This day is dedicated to raising awareness and generating change for the 300…

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