From Seeds to Action: Taking on a New Role for the Coalition’s Future

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As I step into the role of Chair for the World Ovarian Cancer Coalition, I feel deeply honored and incredibly energized. The shoes I have to fill are significant, but I’ve had the privilege of learning from the best—Elizabeth Baugh and Annwen Jones OBE. Their leadership has shaped the Coalition into the impactful organization it is today, and I’m grateful they will continue to work alongside me as we embrace this exciting new chapter.

Our recent in-person Board Meeting in Dublin left me inspired and excited by the momentum we’ve built. With a newly expanded board and new and important working partnerships —for example, with global organizations such as the World Health Organization—we are well-positioned to tackle the challenges ahead. This is a moment of opportunity, and we remain steadfast in our commitment: No Woman Left Behind.

From Evidence to Action: A Turning Point

Our 2023–2028 Strategy, From Evidence to Action: Making Ovarian Cancer a Global Priority, serves as a bold roadmap for achieving profound and equitable change. At its core is our mission to improve survival and quality of life for everyone impacted by ovarian cancer through advocacy, awareness, and evidence-driven initiatives. Our vision is simple yet transformative: a world where every woman, no matter where she lives, has access to the best care and the best chance of survival.

This vision is backed by a compelling moral and economic case for action. Studies like the Socioeconomic Burden of Ovarian Cancer in 11 Countries illustrate the immense financial and societal impact of this disease, providing critical data to inform advocacy and policy change. Similarly, the Every Woman Study™: Low- and Middle-Income Edition, for which I had the privilege of serving as Co-Chair of the Oversight Committee, highlights the disparities in care and outcomes experienced by women in underserved regions, amplifying their voices and identifying solutions to address these inequities.

I’m especially looking forward to the public release of the results of both studies in the first half of 2025. These findings will be a pivotal moment for the global ovarian cancer community, providing actionable insights to drive progress and deepen the understanding of the lived experiences of women affected by this disease.

Groundbreaking Collaboration and Ambition

The Coalition’s strength lies in its partnerships and through these we are genuinely advancing a global movement.

This ambition fuels every aspect of our work. From raising awareness to advocating for policy change and empowering advocacy networks, the Coalition is turning evidence into action to ensure our impact is felt worldwide.

A Personal Commitment

For me, this work has always been deeply personal. My focus has always been the women behind the disease, their families, and their unique stories. That commitment remains at the core of everything we do.

As we move forward, I’m excited to build on our achievements, tackle the challenges ahead, and continue delivering on our promise to ensure no woman is left behind. Together, we will create a future filled with hope, progress, and action—one step at a time.

Robin Cohen

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Robin Cohen Named Chair of the Board of Directors of the World Ovarian Cancer Coalition

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Toronto, Canada – 11 December 2024 – The World Ovarian Cancer Coalition [Coalition] is delighted to announce Robin Cohen, CEO and Co-Founder of the Sandy Rollman Ovarian Cancer Foundation, as the new Chair of its Board of Directors. Robin, a longstanding advocate and leader in the global ovarian cancer community, brings a wealth of experience and passion to the role as the Coalition continues its work to improve survival and quality of life for everyone impacted by ovarian cancer worldwide.

Robin Cohen is an accomplished leader in the ovarian cancer space. She is a past Vice-Chair of the Coalition and currently serves as Co-Chair of the Oversight Committee for the Every Woman Study™: Low- and Middle-Income Edition, which has amplified voices from underserved regions and provided critical insights into disparities in care. At the helm of the Sandy Rollman Ovarian Cancer Foundation, Robin has spearheaded groundbreaking initiatives in advocacy and support. Her contributions to the field have been widely recognised; she was named one of the 75 Greatest Living Philadelphians and the 2022 Be Well Philly Health Hero.

Robin is also a member of the Oncology Nursing Society, the Society of Gynecologic Nurse Oncologists, Sigma Theta Tau Honor Society, and the Cambridge Who’s Who. She currently serves as Secretary of the Ovarian Cancer Research Alliance Board and has previously served on the board of the Ovarian Cancer National Alliance.

Speaking about her new role, Robin said: It’s an honour to take on this responsibility at such a critical juncture. Guided by the exceptional leadership of past chairs Elisabeth Baugh and Annwen Jones OBE, the Coalition is uniquely positioned to address the challenges ahead.

Our 2023–2028 strategy, From Evidence to Action, serves as our bold roadmap for progress. At its heart is our unwavering commitment to equity, awareness, and improved care for all women affected by ovarian cancer. Together, with our expanded Board and global partners, we will turn evidence into action to ensure no woman is left behind.”

The leadership transition comes as the Coalition embarks on a new phase of growth and impact, with Elisabeth Baugh, taking on the Vice-Chair role and an expanded Board that welcomes Julie Torode, PhD, and Dave Powers. They join existing members Past-Chair Annwen Jones OBE, Tammy Brown (Treasurer), Runcie CW Chidebe, Rafe Sadnan Adel, and past Vice-Chair Jane Hill.

Clara MacKay, CEO of the World Ovarian Cancer Coalition, welcomed the appointment: “Robin’s leadership and passion for advocacy make her uniquely suited to guide the Coalition through this next chapter. Her deep understanding of the challenges faced by women with this disease aligns perfectly with our vision to create a world where every one living with, or at risk of ovarian cancer, has the best chance of survival, and best quality of life possible, no matter where they live. With Robin as Chair, supported by our remarkable Board, I am confident that we will continue to achieve impactful progress for women and their families.”

This leadership transition marks a moment of opportunity for the Coalition, which is set to build on its ambitious initiatives. Recent projects such as the Every Woman Study™: Low- and Middle-Income Edition and the Socioeconomic Burden of Ovarian Cancer study are poised to deliver vital insights to inform advocacy and policy change.

About the World Ovarian Cancer Coalition
Founded in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit dedicated exclusively to ovarian cancer. Partnering with over 200 advocacy organisations worldwide, the Coalition is committed to ensuring that everyone impacted by ovarian cancer has the best possible chance of survival and quality of life, regardless of where they live.

The Coalition builds on the success of initiatives like World Ovarian Cancer Day (2013) and the Every Woman Study™ (2018). In 2022, the Coalition, in partnership with the International Gynecologic Cancer Society, expanded its reach with the Every Woman Study™: Low- and Middle-Income Edition, covering 22 countries, with findings presented at the 2024 IGCS Annual Meeting. Recently, the Coalition completed the Socioeconomic Burden of Ovarian Cancer in 11 Countries Study, exploring the economic impact on healthcare systems and individuals affected by ovarian cancer. Publications from this research are expected in 2025.

For more information, contact:
Phaedra Charlton
Director of Communications and Marketing
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

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World Ovarian Cancer Coalition Launches Groundbreaking White Paper on Hereditary Ovarian Cancer

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Toronto, Canada – 10 December 2024 — The World Ovarian Cancer Coalition [Coalition] has today unveiled a landmark White Paper addressing the critical challenges and innovative strategies required to tackle hereditary ovarian cancer globally. With inherited BRCA1 and BRCA2 mutations accounting for 10-20% of ovarian cancer cases, the report highlights a number of key recommendations aimed at closing gaps in access to genetic testing, leveraging innovative technologies, and addressing disparities across healthcare systems.

Key Recommendation: Universal Genetic Testing : A core recommendation from the White Paper is the implementation of comprehensive genetic testing for tumour and germline mutations, regardless of family history. Research cited in the report demonstrates that universal genetic testing can identify up to 50% more mutation carriers who would otherwise be missed using traditional family-history-based criteria. Additionally, population-wide genetic testing for cancer susceptibility genes has proven cost-effective in various healthcare settings, including high-income countries like the UK, where a study by the Institute of Cancer Research and the Royal Marsden showed significant healthcare savings and improved outcomes.

By adopting a universal testing approach, healthcare systems around the world can better identify individuals at risk and offer tailored prevention and management strategies, ultimately saving lives and reducing long-term healthcare costs.

Clara MacKay, CEO of the Coalition, emphasised: “This White Paper delivers a significant call to action. Policymakers must also consider population-based testing for cancer susceptibility genes, supported by scalable strategies that account for the varying capacities of healthcare systems globally. This approach, supported by evidence, allows us to save lives and improve outcomes on a global scale.”

Addressing Global Disparities in Genetic Testing The White Paper was informed by a global Roundtable discussion held earlier this year featuring leading oncologists, genetic counsellors, and patient advocates.

Dr Julie Torode, Chair of the Roundtable and cancer policy expert at King’s College London, highlighted the importance of addressing inequities in genetic testing: “Identifying individuals at heightened risk is essential, but we must learn what works—and what doesn’t—in diverse healthcare settings. Scalable, cost-effective solutions are key to ensuring that these life-saving tools are accessible to all, regardless of geography or income level.”

Findings and Recommendations The White Paper provides a comprehensive analysis of hereditary ovarian cancer and its global landscape. Key findings include:

  • Persistent Inequities: Many high-income countries offer routine genetic testing for ovarian cancer, yet uptake remains low due to limited awareness. In low- and middle-income countries, costs and infrastructure pose significant barriers to access.
  • Technological Innovations: Emerging technologies such as remote genetic counselling and AI-driven personalised risk assessments can remove logistical barriers and extend the reach of genetic testing services globally.
  • Cost-Effective Strategies: Evidence shows that population-wide genetic testing for cancer susceptibility genes can save lives while reducing long-term healthcare costs. Recommended approaches include government-backed initiatives and innovative co-payment models.

Priority Areas for Action The Coalition calls on healthcare providers, policymakers, and advocacy groups to unite in implementing the following priority actions:

  • Expand Education and Training: Equip healthcare professionals with the knowledge to bridge gaps in understanding hereditary cancer risk.
  • Implement Universal Testing: Ensure comprehensive testing for tumour and germline mutations, irrespective of family history, becomes a global standard.
  • Raise Awareness in Underserved Communities: Develop culturally sensitive campaigns to improve awareness and engagement.
  • Strengthen Infrastructure: Build capacity to scale genetic testing and improve outcomes across diverse resource settings.

A Call for Collaboration As the global burden of ovarian cancer continues to rise, the Coalition underscores the urgency of collaborative action to overcome barriers and ensure equitable access to genetic testing and prevention. By addressing the gaps highlighted in this report, stakeholders have the opportunity to empower women worldwide with the knowledge and resources needed to prevent hereditary ovarian cancer and improve outcomes for generations to come.

About the World Ovarian Cancer Coalition
Founded in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit dedicated exclusively to ovarian cancer. Partnering with over 200 advocacy organisations worldwide, the Coalition is committed to ensuring that everyone impacted by ovarian cancer has the best possible chance of survival and quality of life, regardless of where they live.

The Coalition builds on the success of initiatives like World Ovarian Cancer Day (2013) and the Every Woman Study™ (2018). In 2022, the Coalition, in partnership with the International Gynecologic Cancer Society, expanded its reach with the Every Woman Study™: Low- and Middle-Income Edition, covering 22 countries, with findings presented at the 2024 IGCS Annual Meeting. Recently, the Coalition completed the Socioeconomic Burden of Ovarian Cancer in 11 Countries Study, exploring the economic impact on healthcare systems and individuals affected by ovarian cancer. Publications from this research are expected in 2025.

For more information, contact:
info@worldovariancancercoalition.org

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4th Annual World Ovarian Cancer Coalition Impact Award Recipients Announced

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Toronto, Ontario, 29 November 2024 – With a formal ceremony set to take place today the World Ovarian Cancer Coalition released the names of this year’s recipients of the fourth annual World Ovarian Cancer Coalition Impact Awards.

Thirteen awards in 5 categories will be presented at the final session of the Coalition’s 4th Annual Virtual Global Partner Meeting, being held at 2:30pm UTC. The winners, by category, are:

Inspiring Collaborations Award
Celebrating outstanding partnerships that make a difference in ovarian cancer awareness and care:

  • Ovaries, Talk About Them Campaign, Australia
  • Ovacome & Granulosa Cell Tumour Sisters, UK
  • Nigerian National Cancer Research and Treatment, Nigeria
  • Paula Holmes Rodman & Lindsey Holmes, Canada

The Every Woman Study™️ Award
Recognising those who leverage the Every Woman Study™️ to drive positive change in ovarian cancer care:

  • Dr. Rumana Afroz, Dr. Farhana Haque, Dr. Farhana Kalam, Dr. Dilruba Yeasmin, Dr. Rahela Khatun, Bangladesh

Above and Beyond Award
Honouring individuals and organisations exemplifying selflessness, dedication, and compassion:

  • Brittany Turner, USA
  • Dr. Katalin Köblös, Hungary
  • Christine Campbell, Ireland

World Ovarian Cancer Day/Awareness Award
For exceptional contributions to raising awareness of ovarian cancer locally, nationally, or internationally:

  • Nicole Andrews, USA
  • Jane MacNeil, USA
  • Runsi Sen, USA
  • Nimkee Gupta, India/Luxembourg

Outstanding Achievement Award
Recognising lifetime contributions with a significant impact on the ovarian cancer community:

  • Annwen Jones OBE

Clara MacKay, CEO of the World Ovarian Cancer Coalition, remarked, “It is truly humbling to stand among such remarkable individuals and organisations who have turned their own challenges and experiences into beacons of hope and progress for the ovarian cancer community. Each of this year’s recipients embodies the strength, resilience, and determination that drive our collective mission forward. Their contributions, whether through advocacy, innovation, or direct support, have created lasting change and touched countless lives. I am both inspired and honoured to celebrate their achievements today, knowing that their work brings us all closer to a future where no woman is left behind.”

About the World Ovarian Cancer Coalition
Founded in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit dedicated exclusively to ovarian cancer. Partnering with over 200 advocacy organisations worldwide, the Coalition is committed to ensuring that everyone impacted by ovarian cancer has the best possible chance of survival and quality of life, regardless of where they live.

The Coalition builds on the success of initiatives like World Ovarian Cancer Day (2013) and the Every Woman Study™ (2018). In 2022, the Coalition, in partnership with the International Gynecologic Cancer Society, expanded its reach with the Every Woman Study™: Low- and Middle-Income Edition, covering 22 countries, with findings presented at the 2024 IGCS Annual Meeting. Recently, the Coalition completed the Socioeconomic Burden of Ovarian Cancer in 11 Countries Study, exploring the economic impact on healthcare systems and individuals affected by ovarian cancer. Publications from this research are expected in 2025.

For more information, contact:
Phaedra Charlton
Director of Communications and Marketing
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

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A Year of Milestones, Momentum, and Memories in the Fight Against Ovarian Cancer

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Annwen Jones OBE

When I look back on 2024, it will be as a year of profound emotion—a time of hope, progress, and poignancy. It began with a shocking forecast: based on the latest GLOBOCAN data, by 2050, 12 million women will face an ovarian cancer diagnosis, with 8 million of them tragically losing their lives. This statistic isn’t just a number; it’s a clarion call that has strengthened our resolve to change the course of this disease and make ovarian cancer a global health priorit .

From Evidence to Action: Making the Economic Case for Change

We all know, too well, the potentially devastating personal impact of a diagnosis of ovarian cancer, on women and on their families and friends. In 2024, in the first study of its type in cancer, our Socioeconomic Burden of Ovarian Cancer in 11 Countries study, we announced the socio-economic cost of the disease. of our Socioeconomic Burden of Ovarian Cancer in 11 Countries study. The results are staggering: across just these 11 nations, the annual socioeconomic cost of ovarian cancer is $70 billion USD.  Mortality, the lost contribution of women who died from the disease, accounts for a shocking 91% of this burden.  The economic cost of ovarian cancer goes beyond healthcare to the impact on caregivers and on national economies. Improving outcomes for women with ovarian cancer has always been a moral imperative, but we now can show that there is an undeniable economic case that supports our urgent call for governments everywhere to do better.

A Milestone in the Every Woman Study™: Low- and Middle-Income Edition

This year also marked a significant turning point for the Coalition with the completion of data collection for the Every Woman Study™: Low- and Middle-Income Edition. This multi-year project, done in collaboration with our Strategic Advocacy Partner, the International Gynecologic Cancer Society (IGCS), gives voice to close to 2500 women across 22 countries, highlighting their unique challenges and experiences. Reaching this milestone was hugely moving and our hearts are full of gratitude to everyone who was involved, especially the women and the patient advocates that supported the Study. Sadly, since the Study was launched, we have lost some of our biggest champions, including Dicey Scroggins and Celina Benjamin. Their passion and dedication were with us at every step, guiding us towards our shared vision.

Involving 82 hospitals, the study provides an invaluable foundation for understanding the obstacles faced by women in low- and middle-income countries. It was exciting yet humbling to see the top-line results revealed at the IGCS Annual Meeting last month. Long journey times to hospital, low levels of awareness and financial toxicity feature largely in these results as did the poor access to genetic testing, rapid diagnosis, and emotional support. Whilst we eagerly anticipate all of the insights that will unfold, with the first of many papers from this effort expected to be published in early 2025, we confident in saying that patient experience data can provide a nuanced, culturally sensitive, and location appropriate response to dealing with the challenges women face as the burden of ovarian cancer increases.

Strategy in Motion: Progress Two Years Ahead of Schedule

At our recent Board of Directors Summit in Dublin, we took the opportunity to take stock of progress towards our 2023-28- Strategy: From Evidence To Action.

A key theme from our Summit discussions was the value of our partnerships, including our new collaboration with the World Health Organization (WHO) to share and use data from the Socioeconomic Burden Study and the lived experience insights from the Every Woman Study™: Low- and Middle-Income Edition to drive change.

Looking forward, we will be supported by a Global Expert Group, who will advise us on integrating ovarian cancer into existing global health initiatives, especially where impactful work is already underway for breast, cervical, and other cancers. We don’t need to reinvent the wheel; our goal is to work within established frameworks wherever possible to maximise resources and results.

A Look Ahead: Prioritising Prevention

We are also prioritising our focus on prevention as we move from evidence to action. Being able to identify those who have genetic mutations that significantly increase the risk of developing ovarian cancer represents an exciting possibility for preventing the disease. We are also pursuing partnerships on the ground that will help improve outcomes for women with ovarian cancer, for example, through an exciting pilot project with the newly established Nigerian National Institute for Cancer Research and Treatment. We are also very excited and looking forward to working with all our partner advocacy organisations on the roll-out of the results of both Studies early next year.

Leadership and Transition: Passing the Baton

When I first sat at a table of ovarian cancer advocates years ago, we had a bold vision of changing the future for women diagnosed with ovarian cancer through international collaboration, and a clear roadmap for achieving our goals. However, we could have only dreamed of where we are now – not even 10 years from when the Coalition was formally established. It has been my privilege to serve as Chair of the World Ovarian Cancer Board of Directors for the past three years. I am so proud of everything that we have achieved together, at speed, but conscious always of the significant work that lies ahead of us and the crucial need for strong and committed leadership to keep driving positive change. I am therefore extremely pleased to pass the baton to our incoming Chair, Robin Cohen, CEO of the Sandy Rollman Ovarian Cancer Foundation, as she takes on the role this December with a newly expanded board that now includes Dr Julie Torode and Dave Power. This outstanding team, along with Vice-Chair Jane Hill, Treasurer Tammy Brown, Rafe Sadnan Adel, and Runcie CW Chidebe, will continue to keep the patient at the heart of every decision as we fight to accelerate progress. I am also deeply grateful to Director Emeritus Elisabeth Baugh and Scientific Communications Advisor, Eva Schumacher-Wulf, for their enduring commitment to the Coalition. Serving alongside such remarkable individuals has been an honour and I leave the Chair position with a very full heart.  I will remain on the Board as a Director and look forward to continuing to support the vital work of this Coalition as we continue our journey turning evidence into concrete action, so we can drive the change we need to ensure no woman is left behind.

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Global Collaboration and Groundbreaking Progress: Ensuring No Woman is Left Behind in the Fight Against Ovarian Cancer

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Over the past few weeks, I’ve had the privilege of attending two transformative global cancer meetings: the European Society of Medical Oncology (ESMO) Congress and the Union for International Cancer Control (UICC) World Cancer Congress. These experiences have left me feeling inspired and also deeply moved. I believe that these gatherings not only highlight advancements in science and advocacy work but also reinforce the very essence of what we stand for—ensuring that no woman is left behind in the fight against ovarian cancer.

“It is remarkable to witness the progress being made in treatments.”

It is remarkable to witness the progress being made in treatments. At ESMO, a Phase 1 antibody-drug conjugate (ADC) study offered hope for patients with heavily pretreated ovarian cancer, and promising results from studies on cervical and endometrial cancers were shared. These advances are the latest groundbreaking developments in what has been an exciting few years in gynaecologic oncology. Yet, while these victories are to be celebrated, I feel a profound sense of responsibility. With World Gynaecologic Cancer Day just recently behind us, we must reflect on the importance of continuing to strive for improvements in survival rates and quality of life for all women affected by gynaecological cancers. Our vision, as outlined in our 2023-2028 strategy, is clear: everyone impacted by ovarian cancer must have the best chance of survival, no matter where they live​.

“Together we can accomplish far more than we ever could alone”

Beyond the science, what struck me at ESMO was the power of collaboration and partnership. The Patient Advocacy Track united patients, families, oncologists, and healthcare professionals in ways that were, simply put, awe-inspiring. It reinforced for me that together, we can accomplish far more than we ever could alone. I believe that the strength of our global advocacy community, with its passion and commitment, will continue to be the driving force behind profound change. It is remarkable how this network of advocates and professionals embodies our shared mission: to drive equitable and meaningful change for everyone affected by ovarian cancer.

“The emotion toll of knowing that 91% of [the socioeconomic burden of ovarian cancer] comes from the value of lives lost is something that weighs heavily on me and my colleagues.”

At the UICC World Cancer Congress, the unveiling of our Socioeconomic Burden Study was a significant moment. This study, covering 11 countries, quantified that ovarian cancer results in $70 billion USD in losses each year, touching not just healthcare systems but entire national economies. The emotional toll of knowing that 91% of this burden comes from the value of lives lost is something that weighs heavily on me and my colleagues. We feel an even greater urgency to act, knowing that without intervention, millions of women could be lost to ovarian cancer by 2050. It’s moments like this that remind me why our No Woman Left Behind approach is not just a slogan—it is a commitment to equity, access, and survival for all women, regardless of their socioeconomic status or location.

Our Every Woman Study™: Low- and Middle-Income Edition, from which we presented high level results at UICC, was another profound highlight. The data we’ve gathered from 2,446 women in 22 low- and middle-income countries provides never-before-seen insights into their experiences. It demonstrates in clear terms how deeply inequities affect ovarian cancer care, and how much more we need to do to close these gaps. I look forward with much anticipation to releasing more insights at next month’s International Gynecologic Cancer Society meeting in Dublin. It will be an honour to stand with IGCS colleagues, our partners in this work, as we unveil more from this groundbreaking Study. Both of our studies align with our strategic goal of addressing the gaps in global data and evidence, ensuring that every woman, no matter where she lives, can access rapid diagnosis, the best treatment, and the highest quality of care.

One of the most uplifting moments of the World Cancer Congress was the launch of the Nigerian National Institute for Cancer Research and Treatment (NICRAT). It is remarkable to see such a powerful movement take shape in Nigeria. I feel truly optimistic that under NICRAT’s leadership, and with the partnerships we are forging, real and lasting change for ovarian cancer patients in Nigeria is within reach. This, again, shows the power of partnership and collaboration—working together, we can and will create better futures for women facing this disease.

“I am filled with a deep sense of hope and purpose”

As I return to my desk, I am filled with a deep sense of hope and purpose. The insights, the data, and the partnerships we have developed are not just abstract concepts—they are the foundation for real action. I believe that, through our No Woman Left Behind initiative and the strategic pathways outlined in our 2023-2028 plan, we are well-positioned to make significant strides. Together, with our partners, advocates, and supporters, we will ensure that every woman—has the best chance of survival and the best quality of life possible, no matter where she lives.

Clara MacKay, CEO

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World Ovarian Cancer Coalition Unveils Groundbreaking Global Study to Transform Ovarian Cancer Care in Low- and Middle-Income Countries

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Toronto, Canada – 30 May 2024 – Today, the World Ovarian Cancer Coalition is proud to announce the publication of its latest research protocol, “The Every Woman Study™: Ovarian Cancer Patient Experience Study Protocol in Low- and Middle-Income Countries,” in the prestigious journal PLOS ONE. This landmark Study protocol outlines a comprehensive approach to understanding the experiences of women with ovarian cancer in low- and middle-income countries, addressing a critical gap in global cancer research.

Key Findings and Objectives

The Every Woman Study™: Low- and Middle-Income Edition is a multi-country observational study aiming to recruit over 2000 women diagnosed with ovarian cancer across 24 countries in Asia, Africa, and South America. The Study seeks to understand the unique challenges and opportunities to improve survival and quality of life for women in these regions. With a robust methodology, including a meticulously designed questionnaire adapted from high-income countries, this Study will provide unprecedented insights into demographics, knowledge of ovarian cancer, diagnostic routes, treatment access, and the broader impact of the disease on women and their families.

Significance of the Study

Ovarian cancer is notoriously difficult to diagnose and treat, with five-year survival rates below 50% even in high-income countries. The lack of comprehensive data from low- and middle-income countries has historically hindered efforts to improve outcomes for women in these regions. This Study fills that void, offering a foundational evidence base to inform future research, advocacy, and policy interventions tailored to the specific needs of these settings.

Global Collaboration and Future Directions

Developed in partnership with the International Gynecologic Cancer Society (IGCS), this study exemplifies the Coalition’s commitment to global collaboration. It builds on the success of previous initiatives, such as the Every Woman Study™ (2018) and the Global Ovarian Cancer Charter (2020), reinforcing the Coalition’s leadership in driving change for ovarian cancer patients worldwide.

IGCS, a professional membership society that provides education and interdisciplinary mentorship and training programs for gynecologic cancer specialists worldwide, has been instrumental in identifying clinicians in low- and middle-income countries to conduct this research. This project is not only significant because of the data it provides to transform ovarian cancer care, but also the valuable research training and experience it has given to emerging investigators in low- and middle-income countries.

The Study’s findings will be launched later this year with a key session scheduled for the IGCS Annual Global Meeting to be held in Dublin, Ireland in October.

About the World Ovarian Cancer Coalition
The World Ovarian Cancer Coalition is a not-for-profit organization established in 2016. We work globally to ensure that everyone living with, or at risk of, ovarian cancer has the best chance of survival and the best quality of life. More information can be found on www.worldovariancancercoalition.org.

We leverage the momentum of our annual World Ovarian Cancer Day campaign, insights from the 2018 Every Woman Study™, and initiatives like the 2020 Global Ovarian Cancer Charter. In collaboration with IGCS, we are conducting the Every Woman Study™: Low- and Middle-Income Edition across 22 countries and an Ovarian Cancer Cost-of-Illness Study across 11 countries. These studies, set to reveal results in 2024, aim to provide crucial insights and foster targeted interventions to reduce the burden of ovarian cancer.

About the International Gynecologic Cancer Society
Established in 1987 as a not-for-profit, the International Gynecologic Cancer Society (IGCS) unites gynecologic oncologists, radiation oncologists, medical oncologists, pathologists, allied health providers, and other clinicians and researchers who devote their professional lives to gynecologic oncology research and patient care.

The society’s mission is to enhance the care of women with gynecologic cancer worldwide through education and training and public awareness. This is achieved through strategic collaborations with regional and international organizations, promoting research, facilitating the mentorship and training of physicians in low and middle-income settings and contributing to initiatives that support patients, survivors, and advocates in all regions of the world. Learn more about the IGCS at www.igcs.org.

Media Contacts:

World Ovarian Cancer Coalition:
Phaedra Charlton
Director of Communications and Marketing
phaedra@worldovariancancercoalition.org

IGCS:
Debbie Leopold
Communications Specialist
debbie.leopold@igcs.org

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Nigerian Health Leaders partner with Global Coalition on Ovarian Cancer Initiatives

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Abuja, Nigeria – 8 May 2024 – Marking World Ovarian Cancer Day, today the Nigerian Institute for Cancer Research and Treatment (NICRAT) and the World Ovarian Cancer Coalition have announced that they have signed a letter of agreement setting out a shared commitment to improving outcomes for women with ovarian and other gynecological cancers in Nigeria.

Rising incidence and mortality rates underscore the critical need for collaboration to addressing the challenges of the disease, including prevention, diagnosis, treatment, and ongoing care.

Professor Usman Malami Aliyu, MBBS, MPH, FWACS remarked, “Through this agreement the World Ovarian Cancer Coalition and NICRAT are making a positive statement about the power of collaboration between patients, patient advocacy organizations, health care professionals, researchers, and policy makers. We believe that together we can harness our diverse expertise to accelerate solutions that will improve outcomes.  This partnership exemplifies our shared commitment to making a significant impact in the lives of women in Nigeria.

According to the latest Globocan data, global ovarian cancer incidence is set to rise by 55% and mortality by almost 70%. With significant variations between countries, the Coalition will later this year release data from two key studies, an Ovarian Cancer Cost-of-Illness Study and the Every Woman Study™: Low- and Middle-Income Edition. Both studies involve patient advocates and healthcare professionals based in Nigeria.

Clara MacKay, CEO of the Coalition explains the importance of these two key pieces of work for the country: “Featured in both studies, the data we will have for Nigeria will help us better understand challenges and opportunities. Our intention is that these Studies will help inform our global advocacy efforts but also be a powerful resource for organizations working at country level.  We are delighted that Nigeria is the first country from these Studies to agree to a partnership of this kind.

Goals of this new partnership include:

  • Strengthening the role of NICRAT in national ovarian cancer initiatives
  • Fostering collaboration among stakeholders
  • Improving funding for research and access to quality care across the country

Her Excellency Dr. Zainab Shinkafi-Bagudu, a global health advocate, Chairperson of First Ladies Against Cancer of Nigeria, and World Ovarian Cancer Coalition Ambassador highlighted the significance of this partnership: “With incidence set to rise by 120% and a similar surge in mortality expected to occur in Nigeria by 2050, it is vital that we find ways to work together on the challenge of ovarian and other women’s cancers.  The establishment of NICRAT was a such an important, groundbreaking moment for cancer-care in Nigeria. This new his partnership is a hugely positive development and I know will help us ensure that we leave No Woman Behind.”

About the World Ovarian Cancer Coalition

The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where everyone living with, or at risk of, ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. More information can be found on www.worldovariancancercoalition.org

Leveraging the momentum of their annual flagship World Ovarian Cancer Daycampaign, established in 2013, and insights from the groundbreaking Every Woman Study™ in 2018, the Coalition continues to spearhead initiatives for change. At the International Gynecologic Cancer Society (IGCS) annual meeting in 2020, it introduced the Global Ovarian Cancer Charter, emphasizing six Global Goals to enhance care and outcomes. Furthering its research, the Coalition, in collaboration with IGCS, is conducting the Every Woman Study™: Low- and Middle-Income Edition across 22 countries, focusing on previously underrepresented populations. This effort is complemented by an 11-country Ovarian Cancer Cost-of-Illness Study commissioned by the Coalition. The study will evaluate the economic impact of ovarian cancer, exploring direct and indirect costs of the disease across low-, middle-, and high-income countries. Results from these comprehensive studies are anticipated in 2024, promising to offer pivotal insights and foster targeted interventions to mitigate the disease’s burden.

About NICRAT

The National Institute for Cancer Research and Treatment (NICRAT), established by the Federal Government under the NICRAT Establishment Act 2017, is tasked with leading and coordinating cancer research, treatment, and control across Nigeria. NICRAT’s mission is to eliminate cancer through the implementation of rigorous regulations and policies, supported by high-quality, evidence-based research and treatment strategies, executed by a team of highly competent professionals. As a visionary leader in the field, NICRAT aims to significantly impact cancer prevention, treatment, and control, not only within Nigeria but across Africa. Its strategic objectives include providing policy advisory services, regulating and enhancing access to cancer care, driving research and development, mobilizing resources, maintaining a cancer registry, promoting public education, and building capacity in cancer prevention and control.

 

Media Contacts:
Coalition:
Phaedra Charlton
Director of Communications and Marketing
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

NICRAT:
Dr Musa Ali-Gombe
Director Clinical Services
National Institute for Cancer Research and Treatment (NICRAT)
aligombem@nicrat.gov.ng

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Global Coalition Urges World Health Leaders to Prioritise Ovarian Cancer in the Fight for Women’s Health

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Toronto, Canada, April 8, 2024 – In an unprecedented call to action, the World Ovarian Cancer Coalition has today released a startling Data Briefing, alongside a global petition, emphasising the urgent need to recognise ovarian cancer as a global health priority. The Coalition’s findings and petition signify a pivotal moment for the global ovarian cancer community, as projections indicate nearly twelve million women will be diagnosed and eight million will die from the disease by 2050.

The 2024 World Ovarian Cancer Coalition Ovarian Cancer Data Briefing reveals that the incidence and mortality rates of ovarian cancer are set to surge by 55% and almost 70% respectively by 2050, with the greatest increases projected in low- and middle-income countries. The ominous mortality prediction alone surpasses the population of cities like Hong Kong and is more than double that of Los Angeles, underscoring the devastating scale of the crisis at hand.

In response to these findings, a petition addressed to the World Health Organization and health leaders worldwide has been initiated, calling for immediate recognition of ovarian cancer as a global health priority. The petition, encapsulating the Coalition’s #NoWomanLeftBehind movement and launched in time for next month’s 12th World Ovarian Cancer Day campaign, stresses the necessity for comprehensive action across prevention, diagnosis, treatment, and care, particularly focusing on mitigating the disparities and inequalities that exacerbate the disease’s impact.

The Coalition’s briefing and petition highlight the escalating human and economic toll of ovarian cancer, which not only devastates families, friends, and communities but also inflicts significant financial burdens on the global economy. Clara MacKay, CEO, asserts, “With hundreds of thousands of women dying each year, we must work together to make significant improvements in ovarian cancer management, so we can avert the loss of millions more lives.”

In the face of this mounting crisis, the World Ovarian Cancer Coalition urges the global health community to:

  • Recognise ovarian cancer as a global health priority.
  • Integrate ovarian cancer into global women’s health initiatives and National Cancer Control Plans.
  • Address health inequities to ensure access to care and treatment is universal.

“As the data shows, without immediate and coordinated action, millions of women will be left behind,” commented Board of Directors Chair, Annwen Jones OBE. “Our call to action is a rallying cry for a shared global commitment to change the future of this disease, and to work towards our vision of a world where everyone living with, or at risk of, ovarian cancer has the best chance of survival and the best quality of life possible, no matter where they live. The time to act is now.”

For more information about the petition and the Data Briefing, visit worldovariancancercoalition.org.


About the World Ovarian Cancer Coalition 

The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where everyone living with, or at risk of, ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. More information can be found on www.worldovariancancercoalition.org

Leveraging the momentum of their annual flagship World Ovarian Cancer Day campaign, established in 2013, and insights from the groundbreaking Every Woman Study™ in 2018, the Coalition continues to spearhead initiatives for change. At the International Gynecologic Cancer Society (IGCS) annual meeting in 2020, it introduced the Global Ovarian Cancer Charter, emphasizing six Global Goals to enhance care and outcomes. Furthering its research, the Coalition, in collaboration with IGCS, is conducting the Every Woman Study™: Low- and Middle-Income Edition across 22 countries, focusing on previously underrepresented populations. This effort is complemented by an 11-country Ovarian Cancer Cost-of-Illness Study commissioned by the Coalition. The study will evaluate the economic impact of ovarian cancer, exploring direct and indirect costs of the disease across low-, middle-, and high-income countries. Results from these comprehensive studies are anticipated in 2024, promising to offer pivotal insights and foster targeted interventions to mitigate the disease’s burden.

Media Contact:

Phaedra Charlton
Director of Communications and Marketing
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

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Ovarian Cancer: Voices of Hope and Challenge

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Our recent World Ovarian Cancer Coalition Board of Directors meeting started in the usual way, with a short video from someone with personal experience of ovarian cancer.

Lucía, from Guatemala, is a beautiful, bright, recently married, young mother living with ovarian cancer that has now spread. She spoke clearly and eloquently about not knowing even one other person like herself with the disease, and how this lack of access to a support network outside of her immediate family contributes to a lonely and isolating experience.

In December, Charo, a passionate advocate from ASACO in Spain, told us about the challenge of ensuring women diagnosed with ovarian cancer get access to treatment at specialist centres where there are teams of professionals with specific training and experience dealing with the disease – specialist care that is proven to improve outcomes.

She also shared her anguish about the women she has met who have lost their fertility to ovarian cancer, only to face further heartbreak when denied adoption opportunities because of their cancer history. And at another meeting last year, an ovarian cancer survivor from Nigeria told us about her struggle to get a diagnosis and then to find even basic information about the side-effects of her treatment. She now works with the advocacy group Project PINK BLUE to raise awareness of ovarian cancer and support others who are living with cancer.

We call these personal stories Mission Moments. While members of our Board all have strong personal or professional connections to ovarian cancer, these Moments ground us in our mission and remind us of the urgency of achieving our vision of a world where everyone at risk of, or living with, ovarian cancer has the best chance of survival and best quality of life possible – wherever they may live.

When I saw the recently updated Globocan projections for ovarian cancer, my thoughts immediately turned to the women behind the numbers. Hundreds of thousands of women like Lucía, the women that Charo advocates for in Spain – and the women I meet daily as Chief Executive of Target Ovarian Cancer in the UK. Women who deserve so much better.

These new Globocan figures paint a stark picture of a global escalation of annual ovarian cancer cases and deaths that is even higher than the previous projections. Shockingly, Incidence is set to rise by more than 55% and deaths are forecast to jump by nearly 70% by 2050.

Despite advances in treatment, ovarian cancer remains the most challenging of women’s cancers. Survival rates are low – under 50% in higher income countries – and much lower in less developed countries and regions where sadly the burden of the disease is disproportionately higher.

With no screening test for ovarian cancer, it is often diagnosed at later stages when it is more difficult to treat. Even in countries like the UK, women face significant hurdles. For example, results from a National Ovarian Cancer Audit Feasibility Pilot (OCAFP) show that, in England, approximately 1 in 4 women with advanced stage ovarian cancer do not receive any anti-cancer treatment and only 51% receive both surgery and chemotherapy.

As the only global advocacy organisation focused on ovarian cancer, the World Ovarian Cancer Coalition is committed to making a difference, driving profound and equitable change for all those impacted by the disease through partnerships, evidence, advocacy, and awareness.

Our new 5-year Strategy, From Evidence to Action, sets out a clear roadmap with five strategic goals at its heart. Prevention, access to rapid diagnosis and best treatments, awareness and health literacy and data and evidence, all underpin our call to action to have ovarian cancer recognised as a global health priority and included in global women’s cancer initiatives like the global cervical cancer elimination strategy and the Global Breast Cancer Initiative.

Being Chair of the Board of the of the World Ovarian Cancer Coalition is a huge responsibility but also a great privilege. I believe that the work of the Board, our Coalition, and our 200 advocacy partner organisations remains as relevant as ever, more so in light of these recent projections.

In 2024, the Coalition will be releasing results from our groundbreaking Ovarian Cancer Cost-of-Illness Study and Every Woman Study™: Low- and Middle-Income Edition. Our World Ovarian Cancer Day campaign is entering its 13th year, and we are forging ahead with new partnerships and initiatives to help achieve our vision.

We do not underestimate the challenge we face. But we also know that there are people out there with the experience, vision, and commitment who can help make a difference.

If you think this might be you, l invite you find out more about the Coalition and our plans to recruit up to three members to our Board of Directors so that No Woman is Left Behind.

 

Annwen Jones OBE
Board Chair, World Ovarian Cancer Coalition

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