EndoRISE launch marks new era in endometriosis research and support

Researchers, providers, patients and advocates gathered in Connecticut to celebrate the launch of EndoRISE, a groundbreaking state-supported initiative addressing endometriosis, a highly invasive, under-diagnosed and under-researched disease.

The Jackson Laboratory for Genomic Medicine in Farmington, Conn. hosted endometriosis researchers, healthcare providers, patients and advocates on June 6 to celebrate the launch of EndoRISE, a collaboration involving JAX, UConn Health, and the state of Connecticut that advances research, innovation, support and education for this highly invasive, under-diagnosed and under-researched disease.

The celebratory event came on the heels of a $50,000 grant from The Endometriosis Foundation of America, or EndoFound, awarded to Elise Courtois, Ph.D., an endometriosis researcher at JAX who along with Danielle Luciano, M.D. at UConn Health and Rep. Jillian Gilchrest from the state of Connecticut, has spearheaded the establishment of EndoRISE. The program, which hosts the first public, multi-institution diverse data and specimen biorepository of its kind to enable research, clinical and industry collaborations, and Courtois’ endometriosis research were recently highlighted in a Science article for its pioneering status in endometriosis research, policy, and advocacy.

“This meeting was an amazing opportunity to update the community that helped build this effort through their support, including the senators and state representatives at the Connecticut Capitol who voted and passed the budget,” said Courtois. “It was absolutely wonderful to have so many of our supporters – the public, the health care community, JAX, UConn Health, the CT Endometriosis Working Group, the rest of the EndoRISE team – discuss and give feedback on this program as it is now and for its future growth. EndoRISE grew from the work done by this very same community and personally, I am extremely proud to be part of this team,” said Courtois, who is also the director of Single Cell Biology at JAX.

“I hope other states will follow our lead to address fundamentally unmet diseases impacting people assigned female at birth,” she added. “EndoRISE is starting the chain to make a change with endometriosis; we’re opening the dialogue and modeling one way forward, but our hope is the impact will reach to other neglected areas of health for people with uteruses like adenomyosis, uterine fibroids, heavy menstrual bleeding, etc. Showing positive impact by programs like EndoRISE could create a ripple effect if other states take actions too.”

Courtois and Luciano, associate professor of obstetrics and gynecology and director of the Center of Excellence in Minimally Invasive Gynecologic Surgery at UConn Health, opened the event by sharing introductions and information about the journey to establish EndoRISE, followed by a keynote address by Karen Tang, MD, MPH,a renowned women’s health advocate, board-certified gynecologist and gynecologic surgeon. Tang, who reaches millions of viewers each month on TikTok, Instagram, and YouTube with her educational videos that explain reproductive rights, gynecological health and pelvic pain, highlighted the importance of breaking down stigmas associated with reproductive health conditions, which are so often misunderstood, misdiagnosed, or dismissed. She emphasized that even though conditions like endometriosis are common, that does not mean they are normal. Tang also noted that despite its name, minimally invasive gynecologic surgery to find or remove endometriosis can be quite extensive, complex and time-consuming, sometimes taking up to seven hours or more.

Following Tang’s keynote address, Courtois and Luciano invited leaders in endometriosis advocacy, education, research and policy to participate in a panel discussion about nationwide developments in funding for endometriosis and women’s health research, with a focus on the many opportunities for progress for the condition. The panel discussion included Gilchrest, who chairs the Endometriosis Working Group in Connecticut and helped establish EndoRISE, Heather Guidone, a board-certified patient advocate and program director at the Center for Endometriosis Care, and Dan Martin, M.D., scientific and medical director of EndoFound, which strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research such as Courtois’. With this grant, Courtois aims to further model endometriosis by uncovering the role of dendritic cells in perpetuating the disease.

During the event, intimate breakout groups segmented into working groups of providers, researchers, or patients and public advocates in order to brainstorm concrete possibilities for the most immediate and future evolutions of the program. Discussions ranged across many topics, including sharing standardization practices for sample collection for researchers, innovative ideas to increase education resources for providers, and strategies to begin normalizing the conversation around the condition. Each group then shared their major takeaways, concluding the event with a sense of community, shared purpose, hope and progress.

For more information about endometriosis research at JAX, visit www.jax.org/endo.

To learn more about the EndoRISE program, visit www.endorise.org.