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!
We are thrilled to announce that the 6th International Symposium on APS Type 1 will take place on July 10–12, 2025, in the vibrant city…
Thursday, July 10, 2025 – Saturday, July 12, 2025 Hyatt Centric Fisherman’s WharfWe 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
Happy Rare Disease Day to our incredible community! Today is a celebration of you. We honor the love and light you share with the world. We draw strength from your resiliency, creativity, and tenacity. We acknowledge your journey and stand with you through the ups and downs. We are proud of what we’ve accomplished together…
Read MoreRare Disease Day is just over two weeks away, and we hope the resources we’ve shared so far have inspired you to recognize the day with a renewed excitement. In this message, we are covering ways to “Show Your Stripes.” Medical students are taught that hoofbeats mean horses, not zebras. The zebra is the unofficial…
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