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

  • Get Connected in January 2022!

    On Jan 30th, the Immune Deficiency Foundation (IDF), in partnership with the APS Type 1 Foundation,  will be offering a diagnosis-specific “Get Connected Group” for the…

    Sunday, January 30, 2022 12:00 pm - 1:30 pm Virtual - all times Eastern
  • You’re Invited to a Virtual Rare Disease Day Celebration!

    You’re Invited to a Virtual Rare Disease Day Celebration! Grab your favorite zebra print shirt or toss on a striped scarf and meet us online…

    Monday, February 28, 2022 1:30 pm - 2:30 pm Online - EASTERN TIME ZONE
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

SAVE THE DATES: IDF x APS Type 1 Get Connected Series 2022

In partnership with the IDF (Immune Deficiency Foundation), we are planning a regular virtual get-together for our patient community, so that we can connect with other families and medical professionals in the APS Type 1 field! The virtual platform via Zoom allows us to meet and ask questions, share tips, and bond together with community…

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The RARE Compassion Program (Community News)

It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis, and better care for individuals and families living with rare diseases, medical professionals…

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