Researchers, clinicians, policymakers, and patient advocates convene at JAX to confront diagnostic challenges, elevate women's health, and chart new paths for discovery
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Scientific innovation and collaboration were central themes at the 2025 EndoRISE Fall Forum, hosted by The Jackson Laboratory (JAX) on Monday. The statewide event, dedicated to advancing awareness, advocacy, and innovation in endometriosis research and care, was held at JAX's Farmington, Conn. campus and streamed virtually to participants worldwide. The forum was organized by EndoRISE, a state-supported initiative organized by leaders from JAX and the University of Connecticut School of Medicine - a first-of-its-kind program to address endometriosis from many angles.
Endometriosis is a debilitating disease that causes pain and infertility and is the leading cause of hysterectomies among individuals of reproductive age. It affects an estimated 200 million female-born individuals worldwide-including 6.5 million in the United States and one in ten in Connecticut-yet its causes and biology are still not well understood. Lifelong management often requires treatments such as hormone therapy, surgery, and lifestyle changes, underscoring the need for deeper scientific insight and better options for patients.
The gathering brought together a diverse community of researchers, clinicians, patients, advocates, policymakers, and industry partners for robust dialogue on the challenges and breakthroughs shaping the future of endometriosis care.
"This year's forum was an opportunity to unite leaders in endometriosis and explore real solutions," said Elise Courtois, endometriosis researcher and director of the Single Cell Biology Lab at JAX, and one of the founders and director of EndoRISE. "Without continued investigation, endometriosis will remain a disease that requires invasive diagnostics and lacks definitive treatment or cure. Events like this shine a light on how deeply this disease affects not only women, but society as a whole."
The program featured panel discussions and interactive Q&A sessions. Topics included the complexity of diagnosing and treating endometriosis, barriers to care, and the historic challenges of gaining attention for conditions primarily affecting women. A Fireside Chat, moderated by NPR reporter Michayla Savitt, featured leaders from major advocacy organizations, including:
- Heather Guidone, leading patient advocate, Center for Endometriosis Care
- Julia Mandeville, Barbados Association of Endometriosis and PCOS
- State Representative Jillian Gilchrest, Connecticut Endometriosis Working Group
- Caroline Haney, researcher in the Courtois Lab and endometriosis patient
- Alexis Newmark MD, Minimally Invasive Gynecologic Surgeon, UConn Health
- Kayla Olson PT, Select Physical Therapy
A panel of scientific presentations was moderated by Courtois and Dr. Danielle Luciano, UConn Health's OB/Gyn Chair and Professor UConn School of Medicine, who works with Courtois on studying tissue samples from endometriosis patients one cell at a time to learn more about the condition and possible treatments. The panel highlighted cutting-edge research and translational advances. Speakers included:
- Dr. Katie Burns (University of Cincinnati) presenting novel diagnostic approaches using menstrual blood
- Dr. Michal Tal (MIT) exploring links between Lyme disease and endometriosis
- Dr. Tamer Seckin (Hofstra) sharing surgical and clinical perspectives on advancing care
The keynote address was delivered by Stacey Missmer, professor and associate chair for research in Obstetrics and Gynecology at the University of Michigan and adjunct professor of epidemiology at Harvard T.H. Chan School of Public Health. Missmer shared findings on genetic associations in endometriosis and emphasized the power of community in driving progress.
"The most important step is embracing this community and encouraging everyone to bring their expertise to the table," said Missmer. "Women need to be believed, and we need to focus on building connections. That is what will move us forward exponentially."
The EndoRISE Fall Forum underscored JAX and UConn's ongoing commitment to advancing women's health and fostering collaboration between researchers, clinicians, and the patient community.
State Representative Jillian Gilchrest echoed the importance of collaboration: "I've heard from hundreds of women across Connecticut who have suffered in silence with endometriosis for far too long," said Gilchrest. "Events like today's forum bring much-needed attention to this disease and the lived experiences of those affected. The partnerships formed here will serve as a foundation for progress, both statewide and beyond."
