In March 2023, we posted about a potential new therapy to treat hypoparathyroidism from Ascendis Pharma. Click here to read the earlier post. Today, we update you that the U.S. Food and Drug Administration did not approve TransCon™ PTH just yet, but all hope is not lost. While the FDA is requiring additional information about…
Read MoreThe 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 ›
Upcoming Events
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HypoPARAthyroidism Association’s World HypoPARA Day Facebook Live
REGISTER NOW: HPA’s World HypoPARA Day Facebook Live HPA’s Butterfly Effect: Be the Change This World HypoPARA Day (June 1), the Hypoparathyrodism Association invites you…
Thursday, June 1, 2023 7:00 pm - 8:00 pm Virtual on Facebook Live, Times are Eastern Time -
The 5th International Symposium on APS Type 1
Join us in Washington DC in July 2023 for our 5th International Symposium on APS Type 1! For the latest draft agenda and to register,…
Friday, July 7, 2023 - Saturday, July 8, 2023 Melrose Georgetown Hotel
Washington DC -
Arts Festival in Memory of James Read
Sunday, July 9, 2023 1:00 pm Southside (the former St. Katherine's Church)
Colegrave Street
Lincoln, LN5 8DW
England
How We Help
We connect patients, families and doctors, support the work of scientists, and drive research forward.
Stay Informed
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
Hypoparathyroid Therapy – new advances for APS Type 1 patients on the horizon
We know a lot of our patients and families have been impacted by the recall of NatPara in 2019 with many of you on the compassionate use program that is slated to close at the end of 2024. Todd Talarico recently had the opportunity to speak to the Head of Patient Advocacy for Ascendis…
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