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!
APS Type 1 is considered a “rare disease” because it affects fewer than 1 in 2,000 people. However, with over 6,000 conditions meeting this definition,…
Friday, February 28, 2025 Worldwide and OnlineWe 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
Rare 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…
Read MoreOur countdown to Rare Disease Day 2025 continues. As mentioned in our previous message, over the next few weeks we will be sharing resources to help our families observe Rare Disease Day (RDD) in a way that fits the individual interests, skills, and personalities of our unique community members. The aim of this email is…
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