7th April 2025
MEDIA STATEMENT
Endometriosis Australia Clarifies Research Funding and Contributions
Endometriosis Australia (EA) has addressed recent inaccuracies in a news.com.au article regarding the organisation’s financial allocations and research contributions.
The article overlooked important details about the timing and guidance of funding. A significant portion of government funding was received in April 2024, explaining the unallocated funds on the ACNC website.
“We are a small charity working diligently to meet stringent governance requirements while delivering crucial programs with limited resources,” said Monica Forlano, Chair of Endometriosis Australia.
“The focus for the community and those reporting, should be on fostering a brighter future for endometriosis research by addressing the funding challenges that currently exist nationwide. Charities dedicated to raising awareness and driving advancements through funded research are delivering the much-needed medical attention this debilitating disease requires—one that affects an estimated one million Australians. We cannot afford to lose any momentum on our efforts to alleviate the systemic underfunding that has hampered true progress in addressing the needs of Australians living with Endometriosis for decades.”
Key Points of clarification:
- In Mid-April 2024, Endometriosis Australia received the first year’s tranche $ $465,420 of a 3-year government grant totalling $1.328M
- $85,000 for community support
- $287,420 for workplace guidelines and education
- $93,000 for resources to support Australians with endometriosis
- Due to payment by Department of Health in mid April these funds hadn’t been acquitted on these specific projects by the end of FY23/24.
- In that same financial year, $270,000 (not $180,000 quoted in article) in seed grant funding was awarded to endometriosis research funded by donations to EA, not government grants.
- Endometriosis Australia operates with 5 fulltime equivalent staff members, supported by grants and donations.
The 2018 National Action Plan on Endometriosis (NAPE) recommended three key directions: (i) awareness and education, (ii) clinical care and (iii) research. The goal of the NAPE is ‘A tangible improvement in the quality of life for individuals living with endometriosis, including a reduction in the impact and burden of disease at individual and population levels’.
Endometriosis Australia (EA) has been instrumental in the delivery of this goal, through advocacy, education and research. Endometriosis Australia is the single largest source of non-government funding for endometriosis research, providing seed and proof of concept funding that would otherwise not be accessible to researchers. Recipients of EA grants have gone on to receive federal and NHMRC funding, not achievable without such initial support.
- Consultant costs listed in the FY23/24 Financials were for administrative support ($38k), accounting ($11K), grant consulting ($25k), and a national communications agency that supported awareness campaigns to Regional Australia, including creation of a TVC and marketing services ($160k).
- Film production expenses for a 1-hour documentary on fertility ($41K)
Australia’s significant contributions to global endometriosis research will be showcased at the upcoming Endometriosis World Congress in Sydney next month, highlighting the nation’s position at the forefront of advances in this field despite funding challenges.
“Over the past 18months we have welcomed the significant focus on Australia’s national women’s health strategy and specifically endometriosis with the government increasing the number of dedicated endometriosis and pelvic pain clinics from 22-33 nationwide; new Medicare Benefits Schedule for specialist endometriosis ultrasound techniques for earlier more accurate diagnosis; training programs for healthcare professionals (nurses) and increased funding for endometriosis care and research,” said Forlano.
“Endometriosis research remains severely underfunded in Australia. Together, we can make meaningful, lasting change to improve care for Australians living with endometriosis. As the peak body in endometriosis, we advocate for the continuation of the National Action Plan and funding for research and education initiatives,” Forlano concluded.
More information about Endometriosis Australia’s accountability can be found here.
ENDS
Media Contact: media@endoaustralia.org
For more information:
www.endometriosisaustralia.org
About Endometriosis Australia:
Endometriosis Australia is a nationally accredited charity and the peak body for endometriosis in Australia. Since 2013, the organisation has been leading the charge nationally and internationally to increase endometriosis awareness, provide education programs, and fund research to improve the lives of those affected by this challenging condition.
Endometriosis Australia advocated for and supported the development of Australia’s first National Action Plan for Endometriosis (NAPE), aimed at improving patient and medical community understanding of the disease. This was a continuation of the organisation driving the first discussion of endometriosis in Parliament in 2017. Endometriosis Australia is a nationally accredited charity that raises awareness, educates and funds research for endometriosis. We are committed to empowering patients with the knowledge to be in control of their healthcare and promoting patient-centered care solutions.
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