Latest News

Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the lives of persons with APS Type 1/APECED. Building on their research…

RADIOLAB.ORG RELEASES THYMUS PODCAST We invite you to listen to Radiolab’s new podcast entitled “My Thymus, Myself.”  As you may know,  APS Type 1 results from a mutation in the AIRE gene which determines self-tolerance by programming T cells to recognize self and not self.  This 2022 Radiolab podcast does a good job of explaining…

NIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1 Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the…

Congratulations to the APS Type 1 (APECED) Registry community!  We’ve enrolled over 100 patients (106 to be exact) into our very own registry, The APS Type 1 (APECED) Registry.  We have big plans for 2023, including publishing an article using the patient data we’ve collected so far in collaboration with UCLA. We plan to curate…

As the aspirations and goals of our community grows, so too does our board.  We are excited to announce the expansion of our board of directors to include three new members: Dr. Pushpa Rao, Julia Richardson and Dr. Laura Rivard.  We are grateful for their support, collaboration and passion. Dr. Pushpa Rao is the proud…

Your generosity and support now will help make it possible for us to accomplish the following critical objectives in 2023: Host our 5th International Symposium in Washington, D.C. in July 2023 to bring patients, families and researchers together. Continue to build our global research network and fund critical research. Raise awareness and shorten the time for…

Affected Product: Device Description Part Number Serial Number Omnipod DASH® Personal Diabetes Manager (PDM) PDM-CAN-D001-MMSKT-CAN-D001-MM All serial numbers Dear Valued Customer, You are receiving this letter as our records indicate you are a current or past user of the Omnipod DASH® Insulin Management System. This notice is being communicated as a voluntary Field Safety Notification…

Register today and mark your calendar for Friday, October 21 and Saturday, October 22. It’s virtual and it’s free! Click here to register! Friday Lunch Keynote Speaker: Gigi Robinson Gigi Robinson will be a lunch keynote speaker. Gigi, a Gen Z social media influencer, was diagnosed with Ehlers Danlos Syndrome at age 11 and uses her chronic illness as fuel for her passion for advocacy. In her…

The APS Type 1 Foundation is reaching out to the APS Type 1 (APECED) patient community to raise awareness about an opportunity for patients to help advance research from home. What is the goal of the research? The goal of this study is to understand how APS Type 1 (APECED) works on a cellular level…

How rare is APS Type 1 in the United States?  Intriguing new research by Dr. Lionakis’ team, which exactingly analyzed existing public health records, suggests the number of individuals with APS Type 1 living in the U.S. is far greater than previously believed. Title: Prevalence of APECED‑Like Clinical Disease in an Electronic Health Record Database, USA  LETTER TO EDITOR  https://doi.org/10.1007/s10875-022-01254-0…