The APS Type 1 Foundation supports education, awareness, and fundraising for critical research.

Join The APS Type 1 (APECED) Registry

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

A Rare Disease Day Toolkit!

Do you know a student who is interested in raising awareness? February 28 (the rarest last day of the year) marks World Rare Disease Day.  Julia Band Orange and Julia Finch have compiled materials to create a “Rare Disease Day In-a-Box”!  Please click here to find an awareness video, a sample speech, an article for a school…

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Calling Young Adults…Do You Want to be a Rare Disease Leader?

Have you ever wanted to make an even bigger impact? Now’s your chance. The EveryLife Foundation for Rare Diseases is calling on young adults to join its YARR Leadership Academy. The Young Adult Representatives of RDLA (YARR) launched the YARR Leadership Academy, a series of on-line courses offered to a select group of young adults…

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