The World Endometriosis Organisations (WEO) was recently officially launched, with the goal of improving health outcomes for the roughly 200 million patients with endometriosis worldwide, as well as to address major issues affecting them.

With 27 member organizations across the world, the WEO is affiliated with the World Endometriosis Society (WES), which advances evidence-based standards and innovations for education, advocacy, clinical care, and investigations in endometriosis, in collaboration with global partners. The newly established WEO encourages organizations to join WES.

WEO arose from the WES 2017 World Congress on Endometriosis, where stakeholders decided to establish a global network of organizations that emphasizes collaborative efforts in advocacy, education, research, enhanced caregiver support, and better awareness and understanding of the disease that affects 1 in 10 females of reproductive age.

Each year, WEO member organizations must establish and work toward goals in their respective countries. The primary WEO goal this year is to heighten awareness of endometriosis in young people.

“While the disease has plagued people for centuries, it has been swept under the carpet, overlooked in importance and usually given little or no priority in health sectors around the world,” founding principal Deborah Bush, CEO of Endometriosis New Zealand, said in a press release. “Worse still, the disease starts young — often from a child’s first menstrual period — and it can have a debilitating effect on schooling, careers, relationships, everyday function and fertility.”

Kathleen King, chairwoman of the Endometriosis Association of Ireland, said the WEO has the potential to make a meaningful impact.

“For too long, endometriosis has been misdiagnosed and misunderstood,” she said. “Coming together under a strong body like the WEO will allow us to educate, advocate, and represent those living with endometriosis. This partnership ensures a high standard of information being shared with all those involved in the care, research and support of endometriosis.”

Abeesha Toussaint, chairwoman of the Trinidad and Tobago Endometriosis Association, called for a continued structured approach in getting more professionals involved in improving health outcomes and patients’ life quality.

“Patients’ stories seem most profound as there is increased awareness of varying signs and symptoms of endometriosis,” she said. “However, in this context, increased awareness does not equate with improvement in health outcomes for endometriosis patients. They still suffer at the hand of this disease — ineffective and often outdated treatment, significantly reduced quality of life, chronic pain, sub-fertility and infertility, exhausted financial resources, and high absenteeism at schools and workplaces.”

According to Bush, the disorder causes 27% of school-age patients to miss classes on a nearly monthly basis, a figure she called “scandalous.”

For her part, Asdis Bragadottir, treasurer of the Endometriosis Association of Iceland, lamented the more than eight years it usually takes for patients to be diagnosed, mostly because disease symptoms mimic other disorders. The delay puts patients who aren’t being treated at risk of infertility, she said.

“Some drop out of school and others lose their job due to too many sick days. This delay is not acceptable and needs to be addressed by health officials all over the world,” she said.

WEO’s steering committee includes members of endometriosis organizations from Ireland, Iceland, New Zealand, and Trinidad and Tobago. Its 27 member organizations are in Romania, Barbados, Hungary, Australia, France, Finland, Norway, Sweden, Belgium, the Maldives, the United States, Ghana, Kenya, the Netherlands, Nigeria, the United Kingdom, Canada, and Turkey.

For more information, email [email protected].