Recent Developments

The Coalition’s CEO, Clara MacKay, to step down later this year

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Toronto – April 3, 2025 – The World Ovarian Cancer Coalition today announced that Chief Executive Officer, Clara MacKay, will be stepping down later this year after eight years at the helm. Under Clara’s leadership, the Coalition has expanded its global community of advocacy organizations, launched important study initiatives that provide data to encourage prioritization of ovarian cancer in health policy globally, and engaged new sponsors to support our shared vision of a world where everyone at risk of, or living with, ovarian cancer has the best possible chance of survival and quality of life, no matter where they live.

Robin Cohen, Chair of the Coalition’s Board of Directors states, “We are deeply grateful for the visionary leadership and unwavering dedication Clara has brought to our organization. Her innovative spirit and commitment to excellence has shaped the World Ovarian Cancer Coalition, expanding our reach and increasing our work’s impact around the globe. As she embarks on this new chapter, we wish Clara continued success and know that her legacy will resonate with us for many years to come.”

Clara MacKay joined the Coalition in 2017. Under her guidance and leadership, the Coalition has grown to be a world-leading advocacy organization raising awareness, supporting advocacy and influencing health policy of ovarian cancer.

 

 

Accomplishments of the Coalition in the last eight years under Clara’s leadership include;  

  • Launched The Every Woman Study 2018 Edition and completed the Every Woman Study LMIC Edition in 2024. This means over 4000 women worldwide, living with a diagnosis of ovarian cancer, have shared their experiences – representing the largest-ever global survey of women with the disease. The objective was simple: to address the evidence gap and identify a way forward to ensure the best chance of survival and the best quality of life for women with ovarian cancer.
  • Launched the first-of-its-kind study, The Socioeconomic Burden of Ovarian Cancer in 11 Countries Study, that reveals the significant costs and defines actions needed to improve survival and quality of life for ovarian cancer patients and their caregivers.
  • Joined with IGCS to formalize a Strategic Advocacy Partnership to work together on the Every Woman Study LMIC Edition. 
  • Publication of a landmark White Paper addressing the critical challenges and innovative strategies required to tackle hereditary ovarian cancer globally. 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.
  • Appointment of Global Ambassadors to help close gaps in ovarian cancer outcomes. Global Ambassadors support the Coalition’s in its efforts to raise awareness of ovarian cancer, tackle low health literacy, and empower women across the world to take action to improve equitable access to high-quality, affordable care for ovarian cancer.

Clara MacKay, CEO, remarked, “Working for this remarkable organization for the past eight years has been a great privilege and the highlight of my career. I am quite proud of the many programs and studies we have launched and equally grateful to our team, our board, our advocacy organization partners, patient ambassadors and sponsors for their partnership and commitment to our mission.”

 

 

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Dispatch from Seattle: The Coalition attends SGO 2025 by Clara MacKay

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The Society of Gynecologic Oncology (SGO) Annual Meeting on Women’s Cancer is an important touchpoint for the entire community – clinicians, researchers, and those of us in advocacy. A key opportunity to learn about the latest advancements in gynecologic cancer treatment and research.

With no effective screening tool, ovarian cancer prevention remains a crucial area of exploration. The latest update at SGO 2025 on the TUBA-WISP II study was a particularly welcome addition to the program. This study, focused on women at high risk of inherited ovarian cancer, prioritizes preserving quality of life without compromising the benefits of risk-reducing surgery – an essential consideration for those facing these decisions.

The program also included an update on study data highlighting the benefits
of antibody-drug conjugates (ADCs) in treating platinum-resistant ovarian
cancer. ADCs are the new players in ovarian cancer treatment – this is an
encouraging development with significant potential.

Most importantly, it was a privilege and a joy to witness ovarian cancer advocates take the stage, sharing their experiences, insights, and priorities. The advocacy panel at the Patient & Advocate Education Forum was the most powerful I’ve ever attended. Speakers addressed everything from the stigma of a gynecologic cancer diagnosis to its impact on relationships, mental health, and faith – and the hope they carry for those who will follow in their footsteps. We are in good hands with such powerful advocates on our side.

 

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The Coalition at ESGO 2025 in Rome by Frances Reid

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I had a great opportunity last week to showcase the Every Woman Study, low- and middle-income (LMIC) edition at the European Society for Gynaecologic Oncology Meeting in Rome, with a poster outlining potentially novel indicators for optimal cytoreductive surgery beyond age and stage of disease on diagnosis. Using data from 2446 women in the 22 LMICs, our initial analysis shows levels of awareness, family income, human development index status of the country and distance to treatment centre as potentially also playing a part.

Click here to read the poster. 

Conferences such as these are very much about the latest treatments or procedures and constantly push the boundaries of what clinicians can achieve. It was great to hear after several years, the language coming together around the use of PARP inhibitors – “not using them on women with BRCA mutations or those who have homologous recombination deficiency (HRD) is akin to causing harm”, and the first breakthrough in several years for women who are platinum resistant, with Mirvetuximab, an antibody conjugate drug or ADC. Are you lost already in the acronyms? It is all very positive, but for the World Ovarian Cancer Coalition, and clinicians working in low- and middle-income countries, these treatments, and the genomic profile/genetic testing that are needed to correctly use these drugs are still a pipe dream in many situations. It’s not just about access, but affordability, with the very expensive price tags falling on the women and their families. Not one patient in our African cohort in the study received a PARP inhibitor.

So it felt like an important moment to get issues like this raised. I was also really interested to come across work by the GINECO group looking at KELIM scores in Japanese women. KELIM is an emerging method of using CA125 scores to predict responsiveness to chemotherapy, and in the future could also help determine HRD status in the form of a very cheap test. They showed that for Japanese women, the cut off figures for CA125 would need to be different, basically that women from different ethnic backgrounds respond differently, yet for the time being, all women are prescribed drugs and procedures based on trials carried out on mainly white women in the global north. There was also an interesting presentation on toxicity with PARP inhibitors, and how that varied, depending on where the mutations in the BRCA gene occurred. The future really could be much more personalised medicine, as long as the ovarian cancer community and governments work hard to involve and include women from diverse backgrounds.

It’s always hard to know how many people saw the EWS poster, but I had some positive chats with researchers, the poster was also available online and will be published in the International Journal of Gynecologic Cancer. I was delighted as well to meet Dr Edson Mamani, from Arequipa in Peru. He bounded up to me like an old friend, to let me know he had been one of the doctors recruiting women into the study, and was thrilled to have taken part in such an important piece of work.

Thank you ESGO for the opportunity.

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Ovarian Cancer Costs Countries Over $70 Billion Annually, According to a Groundbreaking Global Study by the World Ovarian Cancer Coalition

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TORONTO – February 20, 2025 (Business Wire) – The World Ovarian Cancer Coalition (the Coalition) announced today the publication of a first-of-its-kind study that reveals the major socioeconomic burden ovarian cancer has on communities around the world. Co-authored with the research institute RTI International, the study reveals the significant costs and defines actions needed to improve survival and quality of life for ovarian cancer patients and their caregivers.

Published in JCO Global Oncology, a leading peer-reviewed medical journal, the landmark “Socioeconomic Burden of Ovarian Cancer in 11 Countries Study” reveals the staggering $70 billion burden of ovarian cancer, with over 90% of these costs resulting from lives lost. The study examined data from a diverse group of countries representing a range of income levels: Australia, Canada, Colombia, India, Kazakhstan, Kenya, Nigeria, Malawi, Malaysia, the United Kingdom and the United States.

World Ovarian Cancer Coalition CEO Clara MacKay says, “This unique study demonstrates the significant impact ovarian cancer has on women, their families and carers, health services and the wider economy. Behind these staggering numbers, there are many untold stories of women’s lives being disrupted, facing severe financial hardship and stigma due to their ovarian cancer. We hope, and expect, that by shining a light on the impact of ovarian cancer, policy makers will commit to a formal plan to address the challenges faced by women and acknowledge that by supporting them, society as a whole can benefit.”

Ovarian cancer is one of the most lethal forms of cancer, with significantly low survival rates. According to Globocan’s 2022 projections, by 2050, the number of women around the world diagnosed with ovarian cancer will grow by 55%. Without improved prevention and control measures, mortality will increase by 70%. 

Global Health Inequity

The study’s findings underscore not only the moral and public health imperative to address ovarian cancer but also the urgent economic need to prioritize action. The study highlights significant losses in labor productivity, estimating that 2.5 million workdays are lost annually due to ovarian cancer. Furthermore, more than 9,400 women are absent from the workforce due to the disease. Caregivers, often overlooked in public health planning, dedicate an average of 33 days per year providing essential support to loved ones battling ovarian cancer. 

Dr. Zainab Shinkafi-Bagudu, World Ovarian Cancer Coalition Global Ambassador, President-elect of the Union for International Cancer Control (UICC) and Champion for Women’s Health of the World Economic Forum’s Global Alliance for Women’s Health, added, “Advocates and health professionals in Nigeria work within a socio-cultural system where awareness is poor and presents a huge barrier. Ovarian cancer represents a significant yet understated challenge to women, caregivers as well as our health system and economy. This vital study confirms that and helps us identify the interventions and investments needed to reduce the burden of ovarian cancer.”

A Global Call to Action

The Socioeconomic Burden of Ovarian Cancer in 11 Countries Study shines a spotlight on the pressing need for global prioritization of ovarian cancer. It also highlights the vital role of caregivers and the ripple effects on national productivity and was produced with inputs from the World Health Organization, in line with its Framework for the Meaningful Engagement of People Affected by Noncommunicable Diseases. Raising awareness of ovarian cancer is crucial, particularly in low-and middle-income countries where so many are unaware of the condition and its impact on communities.

Dr. Guy Fones, Director a.i., NCD Department, World Health Organization states, “The data from this groundbreaking study is essential to our understanding of the multifaceted socio-economic impact of ovarian cancer, a disease that has long been under-evidenced in the global health landscape. The World Health Organization is committed to advancing data-backed strategies that prioritize equity and improve access to care and outcomes for all women no matter where they live.”

Addressing the Impact – No Woman Left Behind

The World Ovarian Cancer Coalition’s Inspiring Voices initiative is a platform dedicated to sharing the powerful stories of those touched by ovarian cancer. Nimkee Gupta, an ovarian cancer survivor born in India, says “Cancer is a full body disease and beyond the patient, it is a family disease. Not everyone dies, but everyone suffers.” Stella Matini, a mother of four from Kenya, says “Many women in my country do not have employment, they are housewives at home…Even for me, before my insurance came in…the treatment was taking almost what I earn in a month.”

Mikis Euripides, Study Lead and Policy Consultant, World Ovarian Cancer Coalition, notes, “The World Ovarian Cancer Coalition believes it is possible to change future outcomes if significant improvements in prevention, diagnosis and access to care are implemented. Reducing the burden of ovarian cancer is critical and prevention is key. Expanded access to genetic testing, prevention measures and affordable care is essential.”

Funding for this study was provided by separate grants from: AstraZeneca, Abbvie (formerly ImmunoGen), Novartis and Novocure.

About the World Ovarian Cancer Coalition
The World Ovarian Cancer Coalition, the only global not-for-profit organization focused solely on ovarian cancer, was established in 2016 and comprises over 200 patient advocacy group members in 37 countries. 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, no matter where they live. To learn more, visit our website www.worldovariancancercoalition.org and follow us on LinkedIn, Facebook, Instagram, X and YouTube

About JCO Global Oncology 

JCO Global Oncology (JCO GO), an American Society of Clinical Oncology Journal, is an online-only, open-access journal focused on cancer care, research, and care delivery issues unique to countries and settings with limited healthcare resources.

About RTI International

RTI International is an independent, nonprofit research institute dedicated to improving the human condition.

Media Contacts:

Annabel Deegan, Senior Communications Consultant for the World Ovarian Cancer Coalition media@worldovariancancercoalition.org +44 7810 207571

Helen Shik, Interim Director of Communications, helen@worldovariancancercoalition.org 617-510-4373

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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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