Endometriosis research institute to be set up in Sydney after record-breaking $50m donation
A Sydney university says it has received the single largest donation for endometriosis research in the world.
The donation of $50 million to the University of New South Wales (UNSW) will establish the national Ainsworth Endometriosis Research Institute, with the goal of accelerating breakthroughs in diagnosis and creating precision-based treatments.
Endometriosis is a chronic disease where tissue similar to the lining of the uterus grows outside of the organ, often resulting in severe pain or inflammation and can also affect fertility.
It is estimated one in seven Australian women have the medical condition by the age of 44, but there are still major delays in diagnosis and treatment.
The average time to get diagnosed is about seven years.
UNSW said the donation — which will be spread over a decade — was also the biggest donation to women's health ever in Australia.
"This major partnership positions Australia as a global leader in endometriosis research and women's health, aiming to fast-track diagnosis, improve treatments and change outcomes for the estimated 200 million people living with the disease globally," a spokesperson said.
The university said the institute will work with scientists, clinicians and philanthropists from around the globe — including England, Canada, Denmark, India and the USA.
The donor, the Ainsworth family, made its fortune from poker machines, with businessman Len Ainsworth founding the second-largest gaming company in the world, Aristocrat Leisure.
The Endometriosis Coalition welcomed the announcement and said it would help efforts to better understand, diagnose and treat the condition.
"Endometriosis … costs the Australian economy an estimated $9.7 billion annually," the peak body said.
"Yet until now, investment in understanding the condition has been fragmented and underfunded."
This year, the World Economic Forum named the condition one of the nine diseases most affecting the lives of women, their communities and the global economy.
Many advocates and experts have said research funding has historically lagged behind other chronic conditions, ultimately limiting understanding of the disease and slowing down progress in diagnosis and treatment.
Those experiencing symptoms have also reported facing years of stigma and dismissal by healthcare providers.
Coalition chair Jessica Taylor said the announcement was a pivotal moment for the sector.
"We have always said if we want a cure, we must first understand the disease," Ms Taylor said.
"Today's announcement answers that call and backs it with a dedicated research institute."
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