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

  • International Meeting of Doctors & Scientists working on APS Type 1

    The APS Type 1 Foundation will be hosting an international meeting of leading scientists and doctors working to advance research on APS Type 1 in…

    Thursday, October 6, 2022 - Friday, October 7, 2022 Massey College, University of Toronto
    4 Devonshire Pl, Toronto, ON M5S 2E1
    (By invitation only)
    Toronto, Ontario, Canada
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

[NORD] $50,000 Grant Opportunity from the APS Type 1 Foundation

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following…

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The Centers for Disease Control and Prevention (CDC) Recommendation for the 4th vaccine dose for COVID-19

The CDC now recommends a 4th vaccine dose to be given at least 12 weeks after the 3rd dose for mRNA vaccines in patients >12 years old with moderate or severe immunocompromise. No such recommendation is yet given by the CDC for <12-year-old individuals. Given that APS1 patients carry type I IFN autoantibodies and many are also on immunomodulatory medications that can…

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