Watch Webinar Do you want to hear more from Dr. Lionakis? Watch his October 2024 presentation at a webinar organized by members of the European Reference Network on Rare Endocrine Conditions (EndoERN) of the Helsinki University Hospital. In this webinar, Dr. Lionakis presents findings from over a decade’s worth of research into APS Type 1/APECED….
Read MoreHUDDLE with the APS Type 1 Community
This year we are delighted to introduce HUDDLEs – virtual support and mentoring group meetings focused on families living with APS Type 1. The group meets virtually every other month and provides a safe and confidential space for patients, their families, and caregivers to talk about their shared experiences. When possible, a doctor or other…
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Carry the Torch for APS Type 1
After a one year hiatus, our online “race” is back! The goal of this event is to raise awareness and fundraise for APS Type 1 research and education in association with Rare Disease Day. The Olympics-themed trek starts on Sunday, February 21st. We invite anyone and everyone to run, walk, bike, swim, snowboard, lift weights,…
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Message from the Foundation President – New Year, New Beginnings
The APS Type 1 Foundation wishes you a happy and healthy 2026. Taking a look back on the milestones of 2025, we have a lot to be grateful for as we move into the new year. A Look Back at 2025 The 6th International Symposium on APS Type 1 This past year, we hosted The…
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Thank you! We Raised $50,000 for APS Type 1 Research & Support on Giving Tuesday
Dear Friends, On behalf of the entire APS Type 1 Foundation, we want to extend our deepest gratitude for your incredible generosity on Giving Tuesday. Because of you, we surpassed our goal and raised an amazing $50,000! This success was made possible by: Every single dollar raised directly contributes to our mission. This funding is…
Read MoreWelcome Amy Coan, our New Director of Community Relations
We are delighted to share another momentous occasion in our journey towards finding a cure for APS Type 1 and supporting those affected by this rare disease. Thanks to the generosity of our dedicated donors and supporters, The APS Type 1 Foundation is proud to announce that Amy Coan has joined us as Director of…
Read MoreDave’s Research Corner: Congratulations to this Year’s Nobel Prize Winners in Physiology or Medicine
By: David Seyfert In 2022, at the Foundation’s inaugural Global Scientific Summit, Dr. Olle Kämpe (pictured in center photo) and I were discussing APS Type 1, the AIRE gene, and the critical importance the two played in our understanding of how the immune system works, specifically in regards to the concept known as “central tolerance.”…
Read MoreThe 6th International Symposium was a Great Success
The 6th International Symposium on APS Type 1 did not disappoint! We welcomed over one hundred clinicians, researchers, APS Type 1 families and friends to beautiful San Francisco to: We’re happy so many people were able to join us. If you weren’t able to make it this year, we hope to see you at our…
Read MoreConnect With Us On Social Media
“The Aps Type 1 Foundation” Facebook page is the official page of the Foundation. The Foundation also has an official Instagram page as well! We encourage you to follow us for: The following Facebook groups are additional support groups where our members can interact more informally and directly with one another. These support group pages…
Read MoreBe a Raregiver
Would you like support as you navigate APS Type 1 as a patient or caregiver? Join others in the Raregivers™ community Raregivers Inc. is a global network that delivers emotional support to caregivers, patients and professionals in rare, chronic and complex disease communities. Find support through weekly Self-Care Tuesday Zoom meetings (10 am PT), monthly…
Read MoreCommunity Spotlight: Carina Leveroni
We’re thrilled to shine a spotlight on Carina Leveroni, our first student intern and a dedicated ally to our community whose passion for science and service is an inspiration. The APS Type 1 Foundation really hit the jackpot with our first student intern, Carina Leveroni. Carina graduated from the University of San Diego in May…
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