In the last year, the NIH has written and presented three works detailing their research on using JAK inhibitors (targeted immunosuppressants) to treat APS Type 1 manifestations. The results are promising for our community, and the NIH team is continuing their efforts to advance the research. We are grateful for their work and look forward to…
Read MoreThe APS Type 1 Foundation unites and empowers a global community to drive awareness, education, and groundbreaking research for APS Type 1, transforming lives affected by this rare autoimmune disorder.
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!
Upcoming Events
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REGISTER NOW: 6TH INTERNATIONAL SYMPOSIUM ON APS TYPE 1
We are thrilled to announce that the 6th International Symposium on APS Type 1 will take place on July 10–12, 2025, in the vibrant city…
Thursday, July 10, 2025 – Saturday, July 12, 2025 Hyatt Centric Fisherman’s Wharf
555 North Point Street
San Fransisco, California
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
Words of Encouragement from Emily O’Brian as She Completes NIH Clinical Trial
As all other people living with APS Type 1, my journey has not been linear, and there have been lots of ups and downs. Having a rare disease is hard because one day one thing can get better, but the next day something else can get worse. Leaning on my faith through this disease has…
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