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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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.

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

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World Ovarian Cancer Coalition to Unveil New Report that Highlights Gaps in Ovarian Cancer Care within Low- and Middle-Income Countries

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Insights will outline challenges and opportunities to improve equitable access and affordability to essential medicines in ovarian cancer

Toronto, Canada, September 7, 2022 – Today, The World Ovarian Cancer Coalition (Coalition), announced that it will release findings from a new report titled, The Journey to More Equitable Ovarian Cancer Care, Access to Essential Medicines Roundtable Report, that identifies challenges and opportunities surrounding access and affordability of essential medicines in low-and-middle-income countries (LMICs) for women with ovarian cancer. The report summarizes insights from an April 2022 roundtable discussion convened by the Coalition, featuring a diverse panel of global experts including clinicians, policy experts, NGOs, and ovarian cancer patient advocates. Highlights of the report are to be presented prior to the International Gynecologic Cancer Society Annual Meeting on Wednesday, September 28, 2022, at 8:00am EDT at the Arlo Nomad Hotel in Manhattan, NY, with a virtual option.

By 2040, the number of women around the world diagnosed with ovarian cancer will rise almost 42% and the number of women dying from ovarian cancer each year will increase by 50%. Furthermore, based on 2020 mortality rates, if nothing changes, by 2040 it is estimated that over four million women will die from ovarian cancer worldwide, with the majority of those lost from LMICs. The Roundtable aimed to identify challenges and opportunities to improve access to essential medicines and inform the Coalition on actions it could take to advocate for better access to cancer medicines.

“The burden of ovarian cancer disproportionally impacts countries with minimal resources as over 70% of women diagnosed with ovarian cancer live in LMICs. Access to treatment is vital for all women regardless of where they live, but for those in lower income settings it is especially important to address the access challenge now,” said Clara MacKay, CEO of the Coalition. “Barriers to accessing basic care are complex and require coordinated efforts. By partnering with the International Gynecological Cancer Society to expand our initial Every Woman Study™, and with the knowledge gained from the Roundtable, we hope to empower the global community to recognize that ovarian cancer needs to be a priority that requires action at a global and national level.”

In addition to discussing the access to medicines results, the briefing will also cover early anecdotal reports and details of the Every Woman Study™: Low- and Middle-Income Edition. Presenting in person or virtually at the event will be representatives from the Coalition including the Study Lead, their Study partner, the International Gynecologic Cancer Society, along with several of the Study’s Oversight Committee members. Expanding on the 2018 Every Woman Study™️, this new iteration will document the experiences of women with ovarian cancer in up to 30 LMICs, highlighting the true patient experience and the ways in which ovarian cancer is impacting the lives of women around the world. Initial results are expected in the second half of 2023.

“There is a significant lack of local data within LMICs which hinders the development of accessible cancer treatment and services for those populations,” said Frances Reid, Director of Programmes for the Coalition and Study Lead of the Every Woman Study™: Low- and Middle-Income Edition. “By expanding these data, we hope to raise awareness of those gaps in care and support women and clinicians to tackle the societal, systematic and practical barriers that prevent women from accessing the best care possible.”

“The time is now for global policymakers and governments to recognize the impact of ovarian cancer on women, families, societies, and economies,” said Mary Eiken, CEO of the International Gynecologic Cancer Society. “The concept of equity is embedded into the core of our work and this joint project speaks to the power of collaboration and the importance of bridging the widening gap for women worldwide.”

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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.

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. 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. 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 in 2023.

About the International Gynecologic Cancer Society
Established in 1987 as a not-for-profit, the International Gynecologic Cancer Society is a partnership of advocates, gynecologic oncologists, radiation oncologists, medical oncologists, pathologists, and other clinicians and researchers who devote their professional lives to the field of gynecologic oncology and to uniting the globe in the fight against gynecologic cancers.

The mission of IGCS is to enhance the care of those affected by gynecologic cancers worldwide through education and training and public awareness. The society works to achieve its mission through strategic collaborations with regional and international organizations, hosting and supporting scientific meetings, promoting research and publications, providing mentorship and training opportunities and patient advocacy programming.

The concept of global health equity is embedded in the IGCS mission and is reflected in the breadth of its membership and the design and implementation of its programs. With over 3,000 members from low-, middle-, and high-income countries around the globe, IGCS has purposefully developed an inclusive membership framework that encourages interaction and growth across diverse social, political, and health care systems. Through this framework, IGCS connects members with specific needs to those with corresponding resources and programs; forms partnerships; educates, trains, and mentors clinicians, survivors-patients, and caregivers. More information can be found at www.igcs.org.

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

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Too Late To Treat – Average Time to an Ovarian Cancer Diagnosis is Almost 8 Months

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World Ovarian Cancer Coalition stresses the need for awareness never greater

Toronto, Canada, May 5, 2022 – On the eve of the organization’s 10th World Ovarian Cancer Day (May 8), the World Ovarian Cancer Coalition (Coalition) has today released an analysis showing that if actions were taken across all countries to equalize the ovarian cancer diagnostic pathway, the average, time from symptom appearance to diagnosis could be almost halved by close to 4 months.  This conclusion is based on a further analysis of the 2018 Every Woman Study™️ findings that showed that, globally, the average time to an ovarian cancer diagnosis from when first noticing symptoms is 31 weeks, or 7.75 months.

“The sooner a woman is diagnosed with ovarian cancer the more likely she will be well enough to start and tolerate treatment,“ states Clara MacKay, CEO of the Coalition, “Yet, sadly too many women receive their diagnosis when they are so unwell that few, if any, options remain.  With the advent of new treatments for those with specific genetic mutations or characteristics, this means that many women will miss out on the chance of benefiting from improved outcomes.”

With no screening programme yet available, clinicians who took part in the Coalition’s 2018 Study agreed that raising awareness of ovarian cancer symptoms and risks among women and their physicians provides the best chance of reducing this time to diagnosis. Crucially, the Study found that the more women knew about the disease, the faster they went to their doctor and the more rapidly they were diagnosed.

Key findings from the Coalition’s Every Woman Study™️ highlighted in the Data Briefing on Rapid Diagnosis include:

  • Over two-thirds of women who contributed to the Study said they knew very little or nothing about ovarian cancer prior to their diagnosis.
  • 9 in 10 women experience one or more key symptoms prior to their diagnosis
  • 4 in 10 women felt their doctor didn’t take their concerns seriously

In some countries women are waiting twice as long for a diagnosis than others

The Briefing also compared annual incidence and prevalence of ovarian cancer and concluded that up to 89,826 women die with ovarian cancer within one year of diagnosis.

With incidence and mortality rates set to climb by 2040, the need for awareness have never been greater. “Too many women are being left behind,” explains MacKay, “even when it comes to symptom and risk awareness.  This is something we are determined to change and is why on this our 10th World Ovarian Cancer Day, and for the next two years, we are adopting the theme of “No Woman Left Behind””

To help drive the global awareness movement, the Coalition this year has worked with many of their close to 200 patient advocacy partner organizations to provide core social media materials in as many languages as possible.  “Thanks to our supporters and partner organizations, we now have key messages available in 24 languages with more coming in,” said Phaedra Charlton, Director of Communications and Marketing “As we are a global organization, we want to ensure that we reach as many of those at risk as possible, so no woman – no person – is left behind. Last year, thanks to our partners, our message reached over 100 million people, but we still have a lot of work to do.”  For many, the opportunity of co-branded translated awareness assets is an important step forward in their work.  Raising awareness both amongst women and health professionals are two of the three core activities identified in the latest Data Briefing to reduce delays in diagnosis.

Part of that work, as outlined in this latest Data Briefing includes:

  1. Raise awareness of symptoms among women so they know when to seek help
  2. Improve knowledge among health professionals so they know when to refer women on
  3. Build capacity in health systems to enable timely access to diagnostic tests. 

“Rapid Diagnosis” is one of the six Global Goals as set out by the Coalition’s 2020 Global Ovarian Cancer Charter, and states that: “Women must have access to diagnosis without delay.  Symptom awareness must be improved so women seek and access appropriate help quickly. Doctors also need support so they know who should undergo testing and that they have access to tests without delay so more women can start and tolerate treatment quickly.”

Read more about the Coalition’s Global Ovarian Cancer Charter here.

World Ovarian Cancer Day 2022 has been made possible through the generous contributions of corporate sponsors, including: AstraZeneca, GSK, Novocure, Immunogen, Teckro, Alkermes, Bristol Myers Squibb, and Mersana. Additional support provided by IMV Inc and AOA Dx Inc.

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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.

The World Ovarian Cancer 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. 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. 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 in 2023.

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

SHARE