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

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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

Externally Led Patient Focused Drug Development (EL-PFDD) Meeting

Many in our APS type 1 community are affected by hypoparathyroidism. On March 5th, Julia Richardson joined about a dozen other patients, to share the impact of hypoparathyroidism and treatment at an Externally Led Patient Focused Drug Development (EL-PFDD) meeting. The goal of the meeting was to share the effects of the disease and the…

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A message from our President, Todd Talarico

Welcome to 2024, we hope that you and your family have kicked off the new year with good health and happiness!   Our spring newsletter will highlight some of the amazing activities of our community already this year and provide you with a look at what we are focused on for 2024.  Make sure you read about…

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