Recent Developments

An interview with Ovarian Cancer Australia.

22 January 2026

1. Tell us about how Ovarian Cancer Australia got started. 

Ovarian Cancer Australia (OCA) began as a grassroots movement driven by personal experience and a determination to improve outcomes for women affected by ovarian cancer. OCA’s origins began with Sheila Lee, who was diagnosed with advanced ovarian cancer in 1999. During her illness, Sheila became acutely aware of the limited information and support available. Together with her husband Simon Lee, and others determined to create change, Sheila became a catalyst for ovarian cancer advocacy, laying the foundations for what later became Ovarian Cancer Australia. Despite her death in 2000, Sheila’s legacy lives large, and today Ovarian Cancer Australia proudly stands as the national leading body for advocacy, awareness and support, ensuring no one impacted by ovarian cancer walks alone.

This year, as Ovarian Cancer Australia celebrates 25 years of providing support, care and advocacy to women and families impacted by ovarian cancer, the organisation reflects on how far it has come, from a small, determined group to the national leading body for advocacy, awareness and support, ensuring no one impacted by ovarian cancer walks alone.

2. What are the most significant challenges faced by women with ovarian cancer in Australia? 

Women with ovarian cancer continue to face challenges from even before the time of diagnosis, with an often-lengthy time from symptom recognition to investigations then to diagnosis. Once diagnosed, women then enter the complex world of treating planning for a rare or less common cancer in the growing era of personalised medicine with many different subtypes of disease.

Along with the difficulties of diagnosis, treatment and physical side effects that come with surgery and chemotherapy; women also experience significant emotional distress including anxiety, depression, fear of cancer recurrence or progression and impacts on body image, identity, and relationships. All this alongside what is often a poor prognosis cancer, and the emotional burden is heavy. The high rates of recurrence and limited treatment options also add to emotional stress.

In addition to these physical and mental challenges, are the impacts on finances both from out-of-pocket costs of treatment as well as loss of income which just add to the burden.

These impacts can be even more pronounced for certain groups, including culturally and linguistically diverse backgrounds, and women living in rural and remote areas of Australia.

3. What are your main priorities and programs supporting those affected by ovarian cancer?

Ovarian Cancer Australia provides person-centred care and support through services delivered by specialist ovarian cancer nurses, counsellors, and psychologists. The Support Team complement care and support provided through the health system, offering individualised guidance, disease expertise and interventions including psychology and counselling. 

OCA also provides a suite of evidence-based resources and facilitates in person and online peer support groups.

In addition to supporting women with ovarian cancer and their loved ones, OCA also leads policy and advocacy initiatives to reduce known variation in care across the country, see more timely access to effective and affordable medicines, and engage Government and key decision makers to ensure ovarian cancer is a national priority and receives greater research investment.

4. Tell us about what you have planned for Ovarian Cancer Awareness Month (February) in Australia.  

Ovarian Cancer Australia has a full month of high impact activity ahead, designed to drive awareness, strengthen advocacy and generate vital support for people living with and affected by ovarian cancer.

With public awareness at the core of our mission, we are launching an interactive quiz to test what Australians know about ovarian cancer while addressing critical knowledge gaps with clear, evidence-based facts and figures. The quiz will highlight the often-overlooked symptoms of ovarian cancer, reinforcing the importance of early recognition and informed conversations.

Advocacy remains a cornerstone of Ovarian Cancer Australia’s work. This month, we are proud to release a joint statement alongside ANZCOG and the Ovarian Cancer Research Foundation. This unified message underscores the strength of sector collaboration and calls for continued government focus and investment to deliver better outcomes for everyone impacted by ovarian cancer. We will also host our 12th annual Parliamentary Breakfast, bringing together policymakers, clinicians, researchers and community voices to elevate ovarian cancer as a national health priority.

In partnership with Inherited Cancers Australia, we will also launch a powerful case study that shines a light on hereditary cancer risk and the real-world impact of improved genetic awareness, testing and support, helping to inform policy, practice and community understanding.

Throughout the month, our partners will be activating campaigns to support our work, alongside community members who will be getting involved through fundraising events and activities across the country.

We will also be calling on Australians to support our annual Giving Day on 18 February, when every donation will be doubled for 24 hours, doubling the impact for women and families affected by ovarian cancer.

You can learn more about Ovarian Cancer Australia on their website: https://www.ovariancancer.net.au/

Robin Cohen, Board Chair

17 December 2025

As we approach the end of 2025, I hope you will indulge me as I reflect on my first year as Chair of the Coalition and celebrate the successes we achieved together thanks to the dedication, determination and efforts of our staff, Board, advocacy partners (all 233 of you!), study leads and sponsors. Thank you all for supporting our work addressing the  global need for greater awareness, earlier diagnosis, and equitable access to care for all women with ovarian cancer, so that there is #NoWomanLeftBehind.

Building a body of evidence

In 2025, the findings from two groundbreaking studies were published, providing important data and recommendations for action, to drive meaningful change in support of women with ovarian cancer. In March, the Socioeconomic Burden of Ovarian Cancer in 11 Countries was published in JCO Global Oncology, an American Society of Clinical Oncology Journal. Data from this Study offers pivotal evidence that the Coalition and our advocacy partners can leverage to engage policy makers in new ways to call for policy changes that will benefit women, their families and carers.

And in December, The Every Woman StudyTM – Low- and Middle-Income Countries Edition initial findings were published in The Lancet Obstetrics, Gynaecology & Women’s Health. The EWS-LMIC, a collaborative initiative with IGCS (International Gynecologic Cancer Society) is the first-ever and largest-ever patient-experience comprehensive study capturing the lived experiences of nearly 2500 women with ovarian cancer from 22 low-and middle-income countries. Its publication is accompanied by a direct call to governments, health systems, and global partners to act on the evidence without delay.

And Action!

And act we did! In collaboration with NICRAT (The National Institute for Cancer Research and Treatment in Nigeria), the Coalition launched a 12-month Pilot, designed to address the specific challenges identified in the EWS-LMIC Edition– the urgent need for increased awareness, improved diagnostic infrastructure, expanded access to genetic testing, and better healthcare pathways to facilitate early detection and treatment.

The Global Expert Advisory Group on Ovarian Cancer brings together ovarian cancer advocates, clinicians, and policymakers, working toward the establishment of a Global Ovarian Cancer Mortality Target—an essential step in driving accountability, focus, and measurable progress against this disease.

This year saw the debut of our podcast, “Changing the Ovarian Cancer Story,” which is amplifying voices from every corner of the globe. Through honest conversations and shared experiences, we are building a stronger, more informed, and connected community committed to rewriting the narrative surrounding ovarian cancer.

In November, we welcomed our new CEO, Christel Paganoni-Bruijns, whose two decades of leadership experience in global patient engagement and advocacy will serve us well and I’m excited to work with her to continue advancing our work.

These transitions are also bittersweet. Clara MacKay, a leader whose vision, commitment, and compassion have shaped the Coalition in immeasurable, and lasting ways, and led the Coalition’s successful achievement of so many ambitious initiatives, stepped down after eight years as CEO of the Coalition. We thank her and wish her well.

Looking toward 2026 and beyond

Next year we will celebrate the Coalition’s 10 year anniversary. As we celebrate the many successes of the last decade, we know that there is still work to be done. We will continue to drive awareness of ovarian cancer globally because knowledge of the symptoms and risks are critical to early detection. In 2026, we will continue to generate data that supports action at the global, local and country level. And we look forward to the publication of additional findings from the EWS-LMIC and launching an update of the Every Woman Study – High Income Countries Edition.

An interview with ACTO Italia.

17 December 2025

1. Tell us about how ACTO Italia was started and the regions of Italy you serve.

ACTO Italia (Alleanza Contro il Tumore Ovarico – Alliance against Ovarian Cancer) was founded in 2010 by a group of patients and clinicians to break the silence on ovarian cancer and to give voice and support to women affected by one of the most complex gynecological malignancies. Its creation was driven by the necessity to form a united front, an “alliance” among patients, clinicians, and institutions to improve treatment and assistance. Starting in 2019, Acto Italia widened its activities to all gynaecological cancers.

From 2014 on, Acto Italia fostered the birth of 7 regional associations, due the peculiar structure of the Italian National Health Service, which is managed regionally: ACTO Campania, ACTO Lombardia, ACTO Piedmont, ACTO Puglia, ACTO Sicily, ACTO Tuscany, and ACTO Triveneto. This structure ensures widespread support to patients focusing on specific territorial needs.

2. What are your main priorities and programs supporting those affected by ovarian cancer?

The aim of ACTO Italia is to promote a real change in the management of ovarian cancer, working for its recognition as a health priority at the national and global level.
Therefore the Association’s mission is focused on:

• Promoting knowledge of ovarian cancer through information
• Encouraging primary prevention, screening, and timely diagnosis
• Facilitating access to quality care
• Offering assistance and services for the best quality of life for patients
• Promoting scientific research
• Supporting the rights of patients and their families

During these 15 years, Acto Italia and the regional associations organized many information campaigns and support programmes to improve the patients’ quality of life: nutrition, sexuality, oncoaesthetics, exercise, palliative care, fertility, psychological support, legal support etc.. They also contributed to improve awareness on ovarian cancer and on all gynaecological cancers participating actively in all World awareness days organized by WOCC, IGCS and ENGAGe.

One important groundbreaking campaign was that on BRCA mutation “Io scelgo di sapere” (2016) which involved patients and mutated healthy relatives together with clinicians with stories, videos and “question and answer” on the BRCA mutation.

Among the support programs of Acto Italia itself, let’s mention “Salute in Movimento” (Health in Motion), which is currently active. This is a free, personalized program that, with the help of a personal trainer and a dedicated app, offers patients physical activity paths to regain strength, energy, and confidence.

But one of the cornerstones of our work remains, always and foremost, information, which we provide through our website www.acto-italia.org (140,000 unique users in 2024 performing more than 1 million events) and our social media pages, where the whole Acto network has 30,000 followers altogether. This goes together with the guides on different topics, the webinars and the video interviews with clinicians and patients which can be watched on our dedicated platform Acto Digital and on our Youtube channel.

3. What are the most significant challenges facing your community when it comes to ovarian cancer?

The most significant challenges facing the community revolve around the insidious nature of the disease
and problems within the healthcare system:

• Late Diagnosis and Lack of Screening: ovarian cancer lacks an effective screening test, leading to
  70% of diagnoses at advanced stages, as symptoms are often non-specific.
• Therapeutic Inequalities: differences persist in access to excellent care, genetic and genomic testing, and innovative drugs depending on the region.
• Specialized centres in GO: it is crucial to ensure that patients are referred to highly specialized centers in gynecological oncology, where treatment outcomes are significantly better.
• Quality of life: due to the longer survivorship, new patient needs are emerging, fostering us to find new answers.

4. Can you share an initiative or achievement that you are particularly proud of and that highlights the impact ACTO is having?

ACTO Italia is particularly proud of “Cambiamo rotta. Donne con tumore ovarico. Verso nuovi percorsi” (Let’s Change Direction. Women with Ovarian Cancer. Towards New Paths), the first white paper ever on ovarian cancer, and of the related Manifesto for the rights of ovarian cancer patients, both downloadable from our website.

These documents, the result of in-depth research involving patients, clinicians, and experts, have had a
crucial impact because:

• They have given voice directly to the unmet needs of ovarian cancer patients in the different regions.
• They have provided concrete proposals to institutions to overcome the challenges of diagnosis and treatment.
• They have mobilized public and institutional attention, serving as a fundamental advocacy tool to promote political and health actions that tangibly improve the care pathway for patients.

These white paper had a national launch at the Ministry of Health in 2023 and has been translated in regional events (Campania, Triveneto and Puglia) in 2024 and 2025, to focus the attention of the regional Health Authorities on specific territorial needs. It was awarded the “Cracking Cancer” Award, that is assigned by Italian oncologists.

You can learn more about ACTO Italia on their website: https://www.acto-italia.org/it

A conversation with Frances Reid, Director of Programmes and Every Woman Study™ Lead, World Ovarian Cancer Coalition

11 December 2025

The Every Woman Study™: Low- and Middle-Income Country (LMIC), published today in the Lancet Obstetrics, Gynaecology & Women’s Health, delivers the first comprehensive picture of the lived experiences of women with ovarian cancer in LMIC. 

A total of 2,446 women from 82 hospitals in 22 low-and-middle-income countries in Africa, Asia and Central and South America, participated in this study which combined patient-reported data with clinical insights. 

The EWS-LMIC Edition is a joint initiative between the World Ovarian Cancer Coalition (the Coalition) and the International Gynecologic Cancer Society (IGCS). Today, The Report of the EWS-LMIC was also released, providing additional insights from the study as well as recommendations for actions to help alleviate the issues found including low access to diagnosis and care, low awareness and high costs of ovarian cancer.

Q1: In the Lancet Obstetrics, Gynecology & Women’s Health, the authors note, “To our knowledge, this is the first study to collect detailed information on the ovarian cancer related experiences of women in LMICs.” Why is this so important? 

Frances: There are lots of reasons! Most importantly it is because 70% of women with ovarian cancer live in LMICs, and nothing has been known about their experience to date. Previous studies almost exclusively feature women in high-income countries. Relevant national data is vital when considering how best to tackle the significant challenges of improving survival and quality of life for women. The scale of the study is important too, with almost 2,500 women taking part from 22 countries, through 82 different hospitals. The breadth of patient experience information, from family income, experience of diagnosis and treatments, and support needs, combined with clinical data provides an enormously powerful source of data that will be useful for years to come. 

Q2: What were the key findings of the EWS-LMIC study? 

Frances: The Lancet article is just the first of several papers we hope to publish on the results, given the richness and depth of the data. In this paper we have revealed how late-stage diagnosis, low knowledge of ovarian cancer, and financial hardship are preventing women from receiving the best possible care in LMICs. Their experience of symptoms are very similar to other studies, but the impact of having to pay for diagnostic tests and/or treatments are financially crippling with a third of women saying their family income has fallen below the level they need to live on as a result of their diagnosis and treatment. 

In terms of knowledge, just one in four women had heard of ovarian cancer and knew something about it. Those who had not heard of the disease were less educated, came from lower income families and lived in lower human development index countries. Lower education was also associated with the chances of late stage diagnosis of the disease. This is important as it means any actions taken to improve awareness and late-stage diagnosis must be targeted at those with the least.

It’s also important to note what the women prioritised, which was the development of screening programmes, and free access to diagnostic tests and treatments, as well as raising awareness of symptoms and reducing delays in diagnosis.

In future papers we will look at variations in access to tests and treatments, women’s emotional support needs and routes to diagnosis.

Q3: Can you tell us about some of the comments and challenges women shared about their ovarian cancer experience? How were they impacted emotionally, physically, and financially?

Frances: I want to begin with a story from one of our country lead clinicians, who recounted to me that she had seen five patients who all most likely had ovarian cancer, but just one of them could afford to proceed to a diagnosis.  That means, the findings and comments in the EWS-LMIC study are from women who actually made it that far. There are many that stand out, and bring life to the study, but the ones that touched me most were about delays due to financial hardship – of women starting herbal medicines as they could not afford chemotherapy, or having to frequent prayer houses because they could not afford a doctor visit, despite increased suffering. One woman, in an upper-middle income country had tried to get a genetic test, but it was unaffordable. She later went on to be diagnosed with ovarian cancer, and did get testing as part of a study and was indeed BRCA positive. Her case could have been prevented. 

Overall I was also aware that whilst women felt strongly that other women should be made aware of the symptoms of ovarian cancer, there was an even stronger need for doctors to be able to recognise the condition. Misdiagnosis and inappropriate tests were common reasons for delays. Whilst this is challenging, it does give hope that improvements can be made.

Q4: How will this study impact women in LMIC? How can this data be leveraged to drive change?

Frances: We strongly hope that it will be used to drive change, and there is already evidence of that happening. Our overall global recommendations include reducing time to diagnosis, making diagnostic tests and treatments available and affordable, improving support for women (both financially and psychologically), and increased focus on prevention. The results in Brazil are being used to help draft a white paper on ovarian cancer in the public health system, a new support group Ovarian Cancer Malaysia has been formed and already bringing great benefit to women, and we recently announced the launch of a collaboration with National Institute for Cancer Research and Treatment in Nigeria (NICRAT) on a pilot programme, “Enhancing Prevention, Early Diagnosis, and Treatment of Ovarian Cancer: A Pilot Initiative in Nigeria” to reduce the burden of the disease in the country. Policy makers need data on ovarian cancer to factor into their national cancer control plans and data from the study is already playing an important part in that.  

Read the study in the Lancet Obstetrics, Gynaecology and Women’s Health here. 

We were founded in 2010 because there was very little information available about this disease in Germany. The founders of the foundation are Carolin Masur, a well-known singer who has been affected by ovarian cancer, Sven Olek, a relative and researcher, and Jalid Sehouli, an internationally renowned gynecological oncologist.

What are your main priorities and programs for supporting people affected by ovarian cancer?

 

Can you name a moment, initiative, or achievement that your organization is particularly proud of in connection with your work in the field of ovarian cancer?

Our first photo campaign, “I’m alive!”, featuring 16 women who are long-term survivors after being diagnosed with ovarian cancer—and who have given incredible courage and hope to many other ovarian cancer patients.

 

By Frances Reid, Director of Programmes  

24 November 2025

The location of this year’s International Gynecologic Cancer Society meeting in Cape Town, South Africa could not have been more fortuitous.

With the Co-Chair (Clinical) of our Every Woman Study LMIC Edition and Global Expert Advisory Group on Ovarian Cancer, Dr Tracey Adams, living and working in the city, it seemed the best place for us to be sharing study results, discussing what more we can do to turn data into action, and having a little celebration of everything  that has been achieved, including our forthcoming publication of the first results.

The location also meant a good contingent of our African collaborators were present, but we were also delighted to be together with our EWS-LMIC country leads from Nepal, India, Bangladesh, Kazakhstan, Vietnam, Jamaica and Argentina.

Dr Adams presented to a packed audience on the variations in treatment in LMIC as seen through the Every Woman Study which received a very positive moderation from Dr Thomas Herzog:

“A lot of rich information…. and a road map for potentially transformative action….. A really outstanding study given its breadth and reach….. Highlights the inequity and a tool to get to the why.”

Dr Florencia Noll, our Argentina lead, and member of the Oversight Committee, also presented on the variation in emotional support needs, and how such needs were met (or not). And I gave a poster presentation on the priorities of women with ovarian cancer and how these map to their own experiences, largely based around the financial impact of the disease, and the need for early diagnosis.

The positivity with which the work has been met was a powerful motivator. Four of our African leads got together to compare and contrast their country findings, and scoped out a paper focusing on the Every Woman Study results in their region, and our Indian lead told us of her plans to extend the study more widely in her country. We also had time to hear how the Nigerian Ovarian Cancer Pilot launch had gone, an example where data has led directly to action on the ground as they seek to raise awareness, train doctors, simplify referral pathways and access to medicines and genetic testing.

With my colleague Mikis Euripides who oversees the work of the Global Expert Advisory Group on Ovarian Cancer also in attendance, our time in Cape Town was wisely used meeting members of the Group and collaborators including Dr Karen Canfell of the University of Sydney. We discussed the next phase of the Global Expert Advisory Group’s work with Karen, which aims to establish a compelling rationale for a ‘pillar-based’ global mortality target for ovarian cancer and to mobilize collective action and against which progress can be tracked. This potential collaboration between our two organisations would build on the existing work the Group has done in identifying the global ovarian cancer priorities for both high income and low and middle incomes countries through the Every Woman Studies.

Cape Town is a stunningly beautiful city, and together with an excellent conference programme, we will have nothing but positive memories of our time there, and the work that is underway to leave no woman behind.