We know a lot of our patients and families have been impacted by the recall of NatPara in 2019 with many of you on the compassionate use program that is slated to close at the end of 2024. Todd Talarico recently had the opportunity to speak to the Head of Patient Advocacy for Ascendis…Read More
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 ›
The 5th International Symposium on APS Type 1
Join us in Washington DC in July 2023 for our 5th International Symposium on APS Type 1! For the latest draft agenda and to register,…Friday, July 7, 2023 - Saturday, July 8, 2023 Melrose Georgetown Hotel
How We Help
We connect patients, families and doctors, support the work of scientists, and drive research forward.
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
APS Type 1 Foundation Observes Rare Disease Day in Stride
From February 13th through February 28th (Rare Disease Day), APS Type 1 patients, families, and supporters gathered virtually to participate in a 1000-mile walk. The purpose of the online “race” was to raise awareness of APS Type 1, build community, and fundraise for critical research and programming. The event also honored the memory of James…Read More