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

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

BostonSight Features Dave Seyfert in its 2020 Annual Report

BostonSight® features our very own Dave Seyfert in its Annual Report 2020 on page 19. And, as a bonus, there’s a photo of our group from our 2017 symposium at Stony Brook, NY. “BostonSight PROSE preserves our son’s vision. He’s now untethered!” -Dave Seyfert BostonSight® is a nonprofit healthcare organization that advances the treatment of…

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Running for Rare in NYC

On November 7th we will embark on a 26.2 mile journey, and we hope you all will join us. We are very excited to share that Rebecca Bednarz, a long-time friend of Gaby Talarico will run in this year’s New York City Marathon with NORD’s Running for Rare® Program. All the money Rebecca raises will…

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