Nearly 650 individuals watched the National Institutes of Health’s online endometriosis roundtable “Beyond the Lesion: Charting New Paths” live on Aug. 19. This 90-minute discussion with top experts is one of several the NIH has had this year in response to the White House’s Women’s Health Initiative. It now available here for all to watch.
“The goal with NIH is always to connect the science and research we do with the people who can benefit from that,” said Candace Tingen, chief of the Gynecologic Health and Disease Branch at the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. “Sometimes it can be difficult to cross that bridge, so this roundtable allowed us the chance to share some of our ongoing research on endometriosis and connect that with patient stories and experiences.”
The event featured four presentations:
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“Endometriosis—Whole Health Across Whole Lives” by Stacey Missmer, professor and associate chair for Research in Obstetrics & Gynecology at the University of Michigan.
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“Navigating the Complexities of Endometriosis to Enhance Quality of Life” by Sawsan As-Sanie, director of the Endometriosis and Pelvic Pain Consultive Clinic and co-chief of gynecology at the University of Michigan Department of Obstetrics and Gynecology.
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“Decoding the Language of Uterine Health” by Ridhi Tariyal, CEO and co-founder of NextGen Jane.
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“Transforming Pain into Purpose: A Patient’s Perspective” by Diana Falzone, journalist and ambassador of EndoFound.
Tariyal received EndoFound’s 2024 Innovation Award at the Blossom Ball in May. Falzone has spent the last seven years advocating for patients after being diagnosed with endometriosis in 2016. From speaking several times on Capitol Hill about the importance of endometriosis awareness and knowledge to her work sharing stories as the host of EndoTV, Falzone was honored to be the first speaker at the roundtable.
“To be able to speak to and for people who have suffered with this serious, complex disease is a privilege and huge responsibility,” Falzone said. “Anytime I represent the endo community as a whole, I want to make sure that I do them justice.”
Tingen intentionally chose Falzone to kick off the discussion.
“I think Diana talking openly about her own experience with endometriosis set the tone for the meeting and engaged our audience, making them part of this,” Tingen said. “It wasn’t just directed toward scientists or clinicians or providers. It was directed toward the entire endo community.”
Falzone said endometriosis awareness has come a long way in the past several years, and now is a critical time to take it to another level.
“We’ve brought so much attention to this disease by getting it in front of people and organizations like federal lawmakers, the Department of Defense [which funds research for endometriosis], and the NIH,” Falzone said. “They are becoming equally passionate about it, and now we’re at what I call the game-changing level. We are reaching the people who have the power to make change happen now.”
