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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3rd Annual World Ovarian Cancer Coalition Impact Award Recipients Announced

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Toronto, Ontario, December 1, 2023 – With a formal ceremony set to take place today, December 1, 2023, the World Ovarian Cancer Coalition released the names of this year’s recipients of the third annual World Ovarian Cancer Coalition Impact Awards.

Awards in 6 categories will be presented at the final session of the Coalition’s 3rd Annual Virtual Global Partner Meeting, being held at 2:00pm UTC. The winners, by category, are:

Inspiring Collaborations Award – this Award celebrates the remarkable achievements of people and organisations who have worked in partnership to make a difference. Recipients for this year are:

  • STAAR Ovarian Cancer, USA
  • Professor Ulla Puistola, Finland
  • Ovarian Cancer Research Foundation, Australia

The Every Woman Study™ Award – this Award is to recognize those that are demonstrating their use of The Every Woman Study™ to drive positive change for women within their own settings or country. The 2023 award this year goes to:

  • All clinical and patient advocacy leads of the Every Woman Study™: Low- and Middle-Income Edition, as well as the Study’s Oversight Committee

Transformational Researcher Award – this Award recognises those that have played a significant role in research into ovarian cancer. The 2023 award this year goes to:

  • Hayley Russell, Ovarian Cancer Australia, Australia

Above and Beyond Award – this new Award recognizes individuals or organizations who have gone beyond for those impacted by ovarian cancer, through exemplary care, dedication, and compassion. Recipients for this year are:

  • Acto Piemonte and RiDo – Ricerca per la Donna, Italy
  • Professor Donal Brennan, Ireland
  • Susan Hess, USA

World Ovarian Cancer Day Award – this category acknowledges an exceptional contribution to the annual World Ovarian Cancer Day Campaign and raising awareness of the disease locally, nationally, or internationally. Recipients for this year are:

  • ACCO and Fernando de Lima, Brazil
  • MOG, Portugal

Outstanding Achievement Award – this final award recognizes the exceptional achievement of an individual or organization who has significantly impacted the ovarian cancer community through their work. The recipient of this well-deserved award is:

  • Bar Levy, HaBait Shel Bar, Israel

Clara MacKay, CEO of the World Ovarian Cancer Coalition said: “With cases set to rise by almost 42% by 2040, the work of advocates who work on behalf of all of those impacted by ovarian cancer is more important than ever. It is truly humbling to see such incredible work achieved over the last year by all of our winners, nominees, and the wider ovarian cancer community. “

The awards ceremony will be streamed today, December 1st, at 2pm UTC during the World Ovarian Cancer Coalition Partner Meeting. More information on the meeting and awards ceremony, including replays of all sessions, can be found here: https://worldovariancancercoalition.org/2023-partner-meeting/

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 every woman with 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

The Coalition is a network of close to 200 patient advocacy organizations in 51 countries around the world, building on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018.  Building on the Study, the Coalition launched the Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in over 25 countries, with initial results due late 2023.

For more information contact:

Phaedra Charlton (she/her)

Director of Communications and Marketing

worldovariancancercoalition.org

phaedra@worldovariancancercoalition.org

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The World Ovarian Cancer Coalition Launches Ambitious 5-Year Strategy

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Seoul, South Korea, November 7, 2023 – The World Ovarian Cancer Coalition has unveiled its ground-breaking 5-year strategy to coincide with its participation at the International Gynecologic Cancer Society Annual Meeting in Seoul, South Korea. This comprehensive strategy is poised to foster the creation of a world where everyone 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. As the only global advocacy organization dedicated solely to addressing this devastating disease, the World Ovarian Cancer Coalition will harness this unique position to drive profound and equitable change worldwide.

2023-2028 World Ovarian Cancer Coalition StrategyThe Strategy sets plans for a multifaceted approach directed at filling evidence gaps,  mobilising stakeholders, raising awareness, and securing sustainable support for its ambition to see ovarian cancer recognised as a global public health priority.

The World Ovarian Cancer Coalition’s 5-year strategy is built upon four core goals:

  1. Prevention: Recognizing that about 20% of women with ovarian cancer have a genetic mutation that may be inherited, the Coalition aims to ensure that everyone, everywhere, knows their family history and has access to genetic testing and counseling. This proactive approach empowers women to take measures to reduce their risk through surveillance or risk-reduction measures, including surgery.
  2. Awareness & Health Literacy: While increasing awareness of ovarian cancer symptoms is vital for early diagnosis, health literacy remains a significant challenge, particularly among women with limited access to information. The Coalition’s goal is to enhance global awareness of ovarian cancer, offering information on risk reduction, prevention, the importance of rapid diagnosis, and the need for optimal care.
  3. Access to Rapid Diagnosis & Best Treatments: Access to experienced surgeons in high-volume centers and participation in clinical trials are pivotal for improving ovarian cancer survival rates. The Coalition will strive for equitable access to rapid diagnosis and the best possible treatment, irrespective of geographical and socioeconomic factors.
  4. Data & Evidence: Data is crucial for understanding ovarian cancer’s impact and guiding effective policies. Many countries lack comprehensive data on the disease, inhibiting the development of evidence-based plans. The World Ovarian Cancer Coalition’s objective is to fill these information voids through global, national, and local efforts, including the improvement of cancer registries.

Annwen Jones OBE, Chair of the Coalition’s Board of Directors, stated, “Implementation of this Strategy over the next 5-years will have a transformative impact on the lives of those affected by ovarian cancer globally and nationally.  Its success will lie on building on existing partnerships and mobilising collaborators around the world – in every resource setting.  We are confident that this Strategy marks a new beginning in the fight against this disease.”

The Coalition’s strategic pathways include:

  1. Thought Leadership: The Coalition will convene a Global Advisory Council and Global Summit involving leading ovarian cancer clinicians and advocates to develop a shared global vision and action plan, based on new evidence generated by the Coalition and other experts worldwide.
  2. Global Advocacy: The Coalition will conduct research to identify opportunities for progress in prevention, rapid diagnosis, and access to quality care. Partnerships with global health and government agencies will mobilize support for integrating ovarian cancer objectives into existing health initiatives.
  3. Awareness: Compelling messaging will educate and empower those living with, or at risk of, ovarian cancer, emphasizing the significance of family history, genetic testing, and the importance of a more rapid diagnosis. The Coalition will engage advocacy partners, celebrities, and ambassadors to amplify key messages, secure multi-year corporate support for World Ovarian Cancer Day, and expand its network of ambassadors worldwide.
  4. Growing the Grassroots: Advocacy partners will be empowered with high-quality resources and tools to fill knowledge gaps and facilitate collaboration. The World Ovarian Cancer Coalition will actively involve them in developing and implementing initiatives and promoting the sharing of best practices.

CEO of the Coalition, Clara MacKay, added, “We are determined that ovarian cancer is recognised as a global priority so  the trajectory of this disease is changed. If we do not take action and just maintain the status quo over four million lives will be lost to ovarian cancer by 2040. We are fortunate to work with a strong global network of advocates that share our ambition.”

The launch of the World Ovarian Cancer Coalition’s 5-year Strategy coinciding with the International Gynecologic Cancer Society Annual Meeting in Seoul marks a pivotal moment in the fight against ovarian cancer. By driving forward these ambitious goals and strategic approaches, the Coalition is committed to creating a world where every individual affected by ovarian cancer can look forward to the best possible outcomes, regardless of their location or background. Together, the international community can make ovarian cancer a global priority, reducing its impact and improving the lives of countless women around the world.

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About the World Ovarian Cancer Coalition
Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. In tandem with this, the Coalition has also commissioned an 11-country Ovarian Cancer Cost-of-Illness Study, exploring the cost of this disease on health care systems and the economy. Seven of the countries being explored map over the Every Woman Study: Low- and Middle-Income Edition, which will provide a robust set of quantitative and qualitative data. Results from both studies are due in 2024.

Media Contact
Phaedra Charlton
Director of Communications and Marketing
phaedra@worldovariancancercoalition.org

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Global Media Briefing Discussing Every Woman Study™: Low- and Middle-Income Edition Highlights Early Insights from Bangladesh in advance of World Gynecologic Oncology Day

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Dhaka, Bangladesh – September 19, 2023 – Today esteemed guests from Bangladesh and around the world gathered to mark World Gynecologic Oncology Day to discuss early insights from a landmark ovarian cancer patient experience study underway in the country, the Every Woman Study™: Low- and Middle-Income Edition.

Joining the prestigious panel were Dr. Abdullah, the personal physician of the Prime Minister of Bangladesh; Frances Reid, Director of Programmes and Every Woman Study™ Lead from the World Ovarian Cancer Coalition; Dr. Mostafa Aziz Sumon, International Affairs Secretary of the Oncology Club; and Professor Dr. Shahana Pervin, Country Lead for Bangladesh for the Every Woman Study™.

Chaired by Rafe Sadnan Adel, Founder Chairperson of Cancerbd.net, and Clara MacKay, CEO of the World Ovarian Cancer Coalition, guests discussed critical aspects of women’s well-being with a particular focus on ovarian cancer, one of the most lethal gynecologic cancers for which there is no screening test.

Working in partnership with the International Gynecologic Cancer Society, the World Ovarian Cancer Coalition is currently collecting data in up to 24 low- and middle-income countries of the experiences of women living with a diagnosis of ovarian cancer. Bangladesh was early to sign on the list of countries willing to participate. Event co-chair and Study oversight committee member, Rafe Sadnan Adel, immediately saw the potential of this work, “results from the Study will help us advocate for policies to support cancer prevention and treatment, fundraise for new research and expanded patient support, and strengthen our awareness campaigns.”

Dr. Abdullah expressed, “raising awareness is paramount in the fight against cancer. Achieving this requires specific research and well-thought-out strategies. I am hopeful that the Every Woman Study™, with a focus on ovarian cancer, will achieve success.”

With the incidence of ovarian cancer set to jump by almost 60% by 2040 in Bangladesh, the primary objective of the event was to raise the profile of the disease in the country and more specifically the experiences of the women who are diagnosed. Frances Reid, Study Lead, stated, “while data collection is still ongoing, we already know that the information we are gathering has the potential to improve the landscape for women in the country, and will provide patient advocates and doctors in Bangladesh with invaluable insights that could help shape policies and care.”

Professor Dr. Shahana Pervin, serving as the Country Lead (Bangladesh) for Every Woman Study™, shared her insights, saying, “Data is needed in order for us to be able to make changes, not just cancer registries, but also data of the reality of women and how and when they come to visit us and the barriers that stand in their way.”

Results from the Every Woman Study™: Low- and Middle-Income Edition are due out in 2024 and there will be a report focused on Bangladesh. Clara Mackay, CEO of the World Ovarian Cancer Coalition, remarked, “from the very start of this work, our focus has always been on developing a study, and results, that can be used not only on a global scale, but are robust enough for groups, like Cancerbd.net, to use at country-level to advocate for change and to ensure that women receive the best possible care and have the best chance of survival – no matter where they live.”

About Cancerbd.net
This web-based initiative represents a pioneering effort in the Bengali language, dedicated to fostering awareness about cancer. Operating with a tripartite mission, this portal aims to achieve three core objectives: educating the populace about cancer, disseminating knowledge pertaining to this grave ailment, and extending support to individuals afflicted by cancer.

The principal aim of this platform is to furnish global citizens with comprehensive information about cancer in their native Bengali language. By doing so, it seeks to empower individuals with knowledge, enabling them to make informed decisions regarding this disease. Officially inaugurated on February 14, 2014, under the auspices of the former Information Minister, Hasanul Haque Inu, this momentous occasion took place at the auditorium of the Crime Reporters Association of Bangladesh, situated in the Shegun Bagicha area of Dhaka.

Over the past decade, this platform has remained steadfast in its commitment to raising cancer awareness through the facilitation of information and communication. Furthermore, it has ambitious plans to expand its outreach and impact by incorporating an additional 17 languages in the near future.

About the World Ovarian Cancer Coalition
Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.

Footage of the event is available here: https://www.youtube.com/live/Nnp7fRjYw4U?si=Jvnez3Dh1BCxcFBT

Coalition Media Contact:
Phaedra Charlton
Director of Communications and Marketing
phaedra@worldovariancancercoalition.org

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World Ovarian Cancer Coalition Calls For No Woman To Be Left Behind On 11th World Ovarian Cancer Day

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FOR IMMEDIATE RELEASE

Toronto, Canada – May 3, 2023 – May 8, 2023, marks the 11th World Ovarian Cancer Day, a day where individuals and organizations from around the world come together in solidarity to raise awareness about ovarian cancer and advocate for better care and treatment for those affected by the disease.

Established in 2013 by a group of leaders from ovarian cancer advocacy organizations around the world, World Ovarian Cancer Day is the flagship awareness-raising initiative of the World Ovarian Cancer Coalition. With close to 200 organizations supporting the cause, this day has become a crucial date in the calendar for those fighting against ovarian cancer.

In 2022, the reach of World Ovarian Cancer Day was well over 100 million globally, with close to 28 million reached through the Coalition’s social media channels alone. With the help of partner organizations and sponsors, the World Ovarian Cancer Coalition aims to raise even greater awareness this year.

This year’s campaign theme is “No Woman Left Behind,” and the Coalition has an updated Get Involved Guide to help individuals and organizations participate in the day. The guide includes facts and figures, links to social media artwork, posters, and Zoom/virtual meeting backgrounds. Additionally, the DIY post/poster generator provides a quick and easy way for individuals to get involved by providing suggested text for their posts.

Ovarian cancer is a serious disease that affects millions of women around the world. If nothing is done, it is projected that by 2040 over four million women will be lost to ovarian cancer. However results from their 2018 Every Woman Study™ have shown that 9 out of 10 women experience symptoms prior to their diagnosis, and 69% of women have little to no awareness of ovarian cancer prior to their diagnosis. The more women know about ovarian cancer, the more quickly they can seek medical attention, leading to a better chance of starting and tolerating treatment.

The World Ovarian Cancer Coalition is calling on the global community to come together on May 8th and help raise awareness about ovarian cancer. With support, a world where no woman is left behind in the fight against ovarian cancer is within reach.

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About the World Ovarian Cancer Coalition

Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018.  The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.

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

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Global Ambassadors

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Dorothy Nyong’o, Zainab Shinkafi-Bagudu, and Deborah Harkness Join World Ovarian Cancer Coalition as First Global Ambassadors

African first ladies and esteemed historian partner to raise awareness of ovarian cancer and help improve access to better quality, affordable care

Ambassador Program launches ahead of World Ovarian Cancer Day on May 8

Toronto, Canada – April 25, 2023 – The World Ovarian Cancer Coalition (Coalition) today announced the  organization’s first global Ambassadors to help close gaps in ovarian cancer outcomes: Dorothy Nyong’o, First Lady of Kisumu County, Kenya; Zainab Shinkafi-Bagudu, M.D., First Lady of Kebbi State, Nigeria; and Deborah Harkness, Ph.D., U.S.- and U.K.- based historian and New York Times bestselling author. In their roles as Ambassadors, Mrs. Nyong’o, Dr. Shinkafi-Bagudu, and Dr. Harkness will support the Coalition 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.

If the status quo is maintained, by 2040 an estimated 4 million women will be lost to ovarian cancer. The majority of women (70%)[i] with the disease live in low- and middle-income countries where access to basic medical care is severely limited by the lack of effective infrastructure, limited resources, geographic and cultural barriers. While those in high-income countries often fare better overall, women often experience delays in diagnosis and there is vast variation in care resulting in inconsistent availability, access to, and usage of genetic testing, diagnostics, and the latest treatment options.

“The need to make ovarian cancer a global priority is as urgent as ever. The gap between those who can access the best possible care and those who cannot is continuing to grow and will result in the tragic loss of millions more lives if we don’t take action now,” said Clara MacKay, CEO of the World Ovarian Cancer Coalition. “Mrs. Nyong’o, Dr. Shinkafi-Bagudu, and Dr. Harkness are inspirational, passionate leaders who share our vision of a world where every woman with ovarian cancer has the best chance of survival and best quality of life possible wherever she may live. We are proud to partner with them to lead this call for action, inform the debate, and help educate women around the world about ovarian cancer.”

The World Ovarian Cancer Coalition Ambassadors are:

  • Her Excellency Mrs. Dorothy Nyong’o, Managing Trustee of Africa Cancer Foundation, First Lady of Kisumu County, and Director of 7th Sense Communications Limited. She holds an Executive M.Sc. in Organisational Development from the United States International University (Nairobi), a Postgraduate Diploma in Mass Communications, and a B.A. Hons in French and Political Science from the University of Nairobi.
  • Her Excellency Dr. Zainab Shinkafi-Bagudu, a Consultant Paediatrician and an advocate for women’s health. With a particular focus on cancer, she is often referred to as the mother of health in her native land. In her role as the First Lady of Kebbi State, Dr. Shinkafi-Bagudu works with the state ministries of health, education, and women affairs to implement programmes to sustainably improve menstrual hygiene, girl-child education, and economic empowerment of women, and put an end to gender-based violence.
  • Deborah Harkness, Ph.D., the New York Times and internationally bestselling author of the All Souls series and a professor of European History and the History of Science at the University of Southern California. Dr. Harkness is a well-regarded historian of science and medicine and the recipient of fellowships from the Guggenheim Foundation, the National Council of Learned Societies, the National Science Foundation, and the National Humanities Center. She holds a Ph.D. from the University of California, Davis, an M.A. from Northwestern University, and a B.A. from Mount Holyoke College, and studied at Oxford University.

The Ambassadors will be key to helping to further the Coalition’s mission to empower the global ovarian cancer community through collaboration, knowledge, and action. The launch of the Ambassador Program comes just ahead of World Ovarian Cancer Day, a flagship awareness-raising initiative in which approximately 200 organizations from around the world raise their voices in solidarity in the fight against ovarian cancer.

To learn more about the Coalition, please visit worldovariancancercoalition.org.

Quotes for Media

Her Excellency Mrs. Dorothy Nyong’o – “Sadly, there is a stigma around ovarian cancer for too many in the world, even in 2023, and that is compounded by many societal and economic barriers to health care, not just in my country, Kenya. As a founding trustee of Africa Cancer Foundation, I am excited to serve as an Ambassador so we can improve awareness and access for all women – no matter where they live.”

Her Excellency Dr. Zainab Shinkafi-Bagudu – “I believe that we must be our sisters’ keepers and that when we come together, great things can happen. Through my work at the Union for International Cancer Control, my own Medicaid Cancer Foundation and now as World Ovarian Cancer Coalition Ambassador, I hope to add to the global conversation in addressing the gaps in the continuum of care. Only through collaboration between advocates, policymakers, and private sector will we accelerate change.”

Deborah Harkness, Ph.D. – “While this is not a diagnosis anybody would choose, I am grateful to be here today as a survivor and World Ovarian Cancer Coalition Ambassador to raise awareness for this disease. If we do nothing to change the status quo, by 2040 over four million women worldwide will be lost to ovarian cancer. It is crucial that we be advocates for our health. I fully support the Coalition as they work to make ovarian cancer a global priority, but everyone at risk of developing this disease can also do their part by making awareness a priority for themselves and within their own networks. The more we work together, the closer we will get to #NoWomanLeftBehind.”

About the World Ovarian Cancer Coalition
Formally established in 2016, the World Ovarian Cancer Coalition is the onlyglobal not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018.  The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.

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

[i] Source: Globocan 2020.

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World Ovarian Cancer Coalition’s Updated Ovarian Cancer Atlas Highlights Urgent Need to Make the Disease a Global Priority

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Progress on tests to detect ovarian cancer earlier stubbornly slow and globally major inequities are widening

Toronto, Canada, March 22, 2023 – In advance of leading global gynaecological oncology experts coming together this week at the annual Society of Gynecologic Oncology’s (SGO) meeting in Tampa, Florida, the World Ovarian Cancer Coalition has today released its World Ovarian Cancer Coalition Atlas 2023, a comprehensive literature review identifying the global trends in incidence, mortality, and survival of this disease which continues to have the highest mortality rate of all the female cancers. Whilst there have been an encouraging number of new studies on ovarian cancer in the years since the Coalition’s first edition of the Atlas, the need to make the disease a global priority is as urgent as ever.

Based on 2020 mortality rates, it is estimated that by 2040 over 4 million women will be lost to ovarian cancer. A population-wide screening programme remains a long-held but distant dream, and women across all economies face barriers to diagnosis and care, with many diagnosed so late that nothing can be done, if they are diagnosed at all. What comes through clearly in this latest edition of the Atlas is that without action, the gap between those who can access the best possible care and those who cannot will widen significantly.

While those with ovarian cancer in high-income countries fare better overall, there remain major variations across the continuum of care. Inconsistent availability and usage of genetic testing, diagnostics, and the latest options in treatment and specialist centres access mean that many women fall by the wayside – exposing not only geographical but racial divides between and within countries.

In low- and middle-income countries, where over 70% of women with the disease live, the picture is far bleaker, with cases set to rise at a disproportionate rate as those economies grow and develop, further entrenching disparities that already exist. Datasets that can inform cancer control plans are poor and incomplete. Health care systems are weakened by lack of human resource and basic infrastructure. For many women, the cost of their care falls to them and their families causing extreme financial toxicity, deterring many from seeking help to begin with. And geographic and cultural barriers can also hinder appropriate health seeking behaviours.

In order to better qualify and quantify the burden of the disease, the Coalition is undertaking two critical projects in 2023. The ongoing Every Woman Study™: Low- and Middle-Income Edition is being conducted in 24 countries with close to 2000 women expected to share their experiences of ovarian cancer. Conducted in partnership with the International Gynecologic Cancer Society (IGCS), this highly complex Study will, for the first time, give voice to women who have largely been left unheard.

Frances Reid, Director of Programmes and Every Woman Study™ Lead for the Coalition says, “It is encouraging to see an increasing focus on ovarian cancer in recent years, however given the enormous challenges facing women in lower-income countries, for many the latest developments are of little value, and progress overall is slower than it could be”. Tracey Adams, a leading gynaecologic oncologist in South Africa and Co-Chair of the Study remarks, “This version of the Every Woman Study™ will help us bring the reality of women in low- and middle-income countries into sharp relief so that we can not only qualify their experiences, but also shed light onto the key challenges and opportunities that will help the ovarian cancer community advocate for change – on a local, national, and international level.”

As a companion to the Every Woman Study™, the Coalition is also embarking on another critical piece of work, a Cost-of-Illness Study. In the hope of solidifying the case for urgent change, the Coalition will look at the economic and societal costs of ovarian cancer in 11 countries, representing high- to low-income settings. The Study will also shed light on the impact that positive changes to diagnosis and treatment of the disease could make. Attending this year’s SGO Conference, Clara MacKay, CEO of the Coalition says of this Study, “Combined with the patient experience evidence we are generating with the Every Woman Study™: Low- and Middle-Income Edition, it is our hope that these two Studies will help us identify concrete priorities for a global plan of action that will be endorsed by the international community. Ultimately, until we commit to making this disease a global priority, we are sadly facing a future where over 4 million women are lost to this disease, and where women across all economies face a chasm of disparities and poor outcomes.”

Both Studies are set to conclude this year, with initial results becoming public early in 2024.

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About the World Ovarian Cancer Coalition

Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018.  The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.

Media Resources:

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

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