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!
The NORD® Rare Diseases and Orphan Products Breakthrough Summit® convenes thought leaders from patient advocacy organizations, industry, academia, research and government to discuss the most…
Sunday, October 20, 2024 – Tuesday, October 22, 2024 Washington, DCThe incredible lineup of experts: Dr. Aliya Khan, Dr. Michael Mannstadt, Dr. Mark Warren, Dr. Dolores Shoback, Dr. Mishaela Rubin, the NIH team, Dr. Lynn…
Saturday, November 2, 2024 – Sunday, November 3, 2024 Sterling, VA and OnlineFollowing Cyber Monday, the Tuesday after Thanksgiving is known as #GivingTuesday—a day dedicated to gratitude and generosity, where people around the world contribute to causes…
Tuesday, December 3, 2024 OnlineWe 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
Congratulations to Kevin and Jamie on their 30th wedding anniversary. This milestone is not just a celebration of their enduring love and partnership but also a testament to their commitment to making a difference in the lives of others. In lieu of traditional gifts, Kevin and Jamie chose to channel their celebration into a cause…
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You have the power to make a significant impact on the future of the APS Type 1 community by engaging with the networks of family, friends, employers, coworkers, and community members around you. Today, we are celebrating four stories that we hope will inspire you to harness the collective power of many. READ MORE
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