When and Where
- July 10-12, 2025, starting with a welcome reception on July 10th and concluding on July 12th with a baseball game at Oracle Park between the SF Giants and the LA Dodgers
- Hyatt Centric Fisherman’s Wharf, in San Francisco, California
Our symposium will bring together APS Type 1 families and medical experts from around the globe to share and learn about the latest developments on research and management of APS Type 1. We will share experiences and best practices, see old friends and familiar faces, and develop new friendships and connections. Together, we are stronger.
Patients, families, caregivers, researchers, and clinicians are all welcome and encouraged to attend! We are thrilled to bring our symposium to the West coast, conveniently scheduled just before ENDO 2025, the Endocrine Society’s signature annual meeting, which expects to bring together over 7,000 attendees.
Agenda
| DAY | TIME | EVENT |
| Thursday | 5:00-7:00 pm | Welcome Reception North Point Lounge |
| Friday | 8:00-9:00 am | Registration & Breakfast North Point Lounge |
| 9:00-9:10 am | Welcome Remarks Presidio Ballroom Todd Talarico, President, APS Type 1 Foundation | |
| 9:10-10:40 am | Updates from the NIH Natural History Study and Clinical Trial Dr. Michail Lionakis, NIH | |
| 10:40-11:00 am | Health Break | |
| 11:00-11:30 am | Community Involvement in Research: Registry and Clinical Trials Julia Richardson, Dr. Laura Rivard, Robin Finch and Emily O’Brian | |
| 11:30 am-12:00 pm | Building Our Foundation: Creating a Youth Ambassador Program and Community-based fundraising Dr. Laura Rivard, Gaby Talarico, Casey Daghigh and Pablo Ramirez | |
| 12:00-1:00 pm | Networking Lunch North Point Lounge | |
| 1:00-2:15 pm | Adrenal Insufficiency and Hypoparathyroidism in APS Type 1 – Preparing for Procedures Presidio Ballroom David Seyfert, Dr. Dolores Shoback, UCSF | |
| 2:15-3:15 pm | Unconference Session | |
| 3:15-3:30 pm | Health Break | |
| 3:30-4:45 pm | Introduction to Raregivers Padma Gordon, M.Ed | |
| 4:45-5:15 pm | Closing Remarks Presentation of Quilts Group Photo | |
| 9:00-12:00 pm 1:00-5:00 pm | Childcare Amador Room | |
| Saturday | 8:00-9:00 am | Breakfast North Point Lounge |
| 9:00-9:45 am | Solu-Cortef Emergency Injection Training Session Presidio Ballroom Julia Baghai, Endocrine Nurse, UCSF | |
| 10:00-11:30 am | Parallel Sessions Presidio Ballroom: Understanding the Breadth of APS Type 1 (Dr. Mark Anderson, UCSF) Amador Room: Feeling Great and Looking Great! Living Well with Alopecia and Other Differences (featuring special make-up artists) | |
| 11:30-12:00 pm | Closing Remarks | |
| 1:00 pm | Optional Saturday Afternoon Activity (must have purchased ticket – game is sold out) SF Giants Game at Oracle Park |
About our Speakers
Thank you to our tremendous speakers for joining us and sharing their expertise and experiences.
Michail Lionakis (NIH)
Dr. Michail S. Lionakis, Chief, Fungal Pathogenesis Section, Laboratory of Clinical Immunology and Microbiology, NIAID, NIH, obtained his MD and ScD from the University of Crete, Greece. He did clinical and research training at MD Anderson Cancer Center, Baylor College of Medicine, and NIH. His IRB-approved APS Type-1/APECED clinical research protocol aims to understand the mechanisms of autoimmunity and fungal susceptibility and improve diagnostic and therapeutic strategies for patients.
Dolores Shoback (UCSF)
Dr. Shoback cares for patients with a variety of disorders related to the endocrine system, focusing particularly on metabolic bone disease, parathyroid disorders and osteoporosis. She also directs UCSF’s physician training program in diabetes, endocrinology and metabolism. Her research interests include metabolic bone disease, the calcium-sensing receptor and parathyroid hormone. Dr. Shoback completed her undergraduate studies at the University of Pennsylvania. She earned her medical degree from the Johns Hopkins School of Medicine and completed a residency in internal medicine at the Johns Hopkins Hospital. She completed a fellowship in endocrinology at Brigham and Women’s Hospital.
Mark Anderson (UCSF)
Dr. Mark Anderson, MD, PhD, is a professor and physician scientist in the UCSF Diabetes Center and a recognized expert in the genetic underpinnings of autoimmune diseases and the control of immune tolerance. He helped establish a genetic mouse model of APS Type 1 to help understand how tolerance is disrupted in APS Type 1 patients.
Padma Gordon (Raregivers)
Padma Gordon is a practitioner with Raregivers Inc., a global network that delivers emotional support to caregivers, patients and professionals in rare, chronic and complex disease communities. Ms. Gordon is a spiritual guide, embodied mindfulness counselor, movement educator, author of Being Together: Practical Wisdom for Loving Yourself and Your Partner (published August 2020), mother and lover of life who skillfully invites people to deepen their connection to body, heart, and soul. Raregivers currently supports over 21,000 rare families across 33 countries, with a goal to connect and educate 3.5 million Raregivers™ by 2026.
About the Hotel
Hyatt Centric Fisherman’s Wharf
Located near Pier 39, Hyatt Centric Fisherman’s Wharf is the perfect place to start your next San Francisco adventure. Relax in their spacious rooms and suites with soothing nautical tones. Dine at Brick & Beam where you’ll find local culinary favorites and craft cocktails. Or, take a dip in the heated outdoor pool and hot tub. It‘s one of the best ways to experience the city by the bay.
Things to do in Fisherman’s Wharf and Around San Francisco
There are so many fun and interesting things to do and explore in San Francisco. Click here for a sampling of nearby attractions.
Baseball Game – SOLD OUT
Join us after the conclusion of the conference at Oracle Park to watch the San Francisco Giants take on the World Series Champion Los Angeles Dodgers.
Questions
We hope to see you this summer in San Francisco. If you have any questions or suggestions, please contact us.
Past Events
We were proud to host our 5th International Symposium on APS Type 1 in Washington D.C. in July 2023. Please click links below for video recording, PPT slides and program.
We were pleased to host a virtual symposium in 2021 as we continued to manage our health during the Covid-19 pandemic. Videos from our virtual event can be accessed here.
We were very proud to host our 3rd International Symposium on APS Type 1 as a part of the Immune Deficiency Foundation’s (IDF) Annual Conference in National Harbor, Maryland, USA. In addition to presentations on the latest findings from the NIH’s natural history study, we held presentations on the challenges of puberty in APS Type 1 and managing adrenal insufficiency and hypoparathyroidism in emergencies and for planned procedures. Our group also benefitted from the presentations at the larger IDF conference.
We had an incredible Symposium in 2017 in Stony Brook, New York, USA. Hosted by Sherri and David Seyfert, along with their family and friends, we enjoyed world-class presentations at the beautiful facilities at Stony Brook University. Highlights included talks on eye care, malabsorption, the role of the thymus in APS Type 1, and connecting APS Type 1 research to other diseases, such as Type 1 Diabetes.
The 1st International Symposium on APS Type 1 was held at SickKids Hospital in Toronto, Canada. Over 20 families joined with speakers from across the U.S., Canada and Europe. Highlights included a problem-solving panel discussing the challenges that occur in managing endocrine symptoms combined with malabsorption, autoimmune hepatitis in APS Type 1, the biology and immunology of AIRE, and growing up with APS Type 1.