Watch Webinar Do you want to hear more from Dr. Lionakis? Watch his October 2024 presentation at a webinar organized by members of the European Reference Network on Rare Endocrine Conditions (EndoERN) of the Helsinki University Hospital. In this webinar, Dr. Lionakis presents findings from over a decade’s worth of research into APS Type 1/APECED….
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!
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
HUDDLE with the APS Type 1 Community
This year we are delighted to introduce HUDDLEs – virtual support and mentoring group meetings focused on families living with APS Type 1. The group meets virtually every other month and provides a safe and confidential space for patients, their families, and caregivers to talk about their shared experiences. When possible, a doctor or other…
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