Category: News

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…

Thank you to the Lovett family and friends, the Holy Rosary CYO Program and Gordo’s North for their generous support of our foundation.  Their 2022 March Madness fundraiser in memory of Kaitlyn Lovett raised $1,775 in support of our mission to raise awareness about APS Type 1 and to help find a cure. The Holy…

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following…

The CDC now recommends a 4th vaccine dose to be given at least 12 weeks after the 3rd dose for mRNA vaccines in patients >12 years old with moderate or severe immunocompromise. No such recommendation is yet given by the CDC for <12-year-old individuals. Given that APS1 patients carry type I IFN autoantibodies and many are also on immunomodulatory medications that can…