Challenging the Global Retinoblastoma Burden
Originally Published: Saturday July 7, 2018 | Republished: Monday July 6, 2026.
July 11, World Population Day, focuses attention on the urgency and importance of population issues. Helen Dimaras PhD considers the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.
On world population day, observed annually on July 11, we are encouraged to “focus attention on the urgency and importance of population issues.” The world’s population grows by 80 million people every year and currently stands at over 8.3 billion. This is estimated to increase to 8.6 billion by 2030, and 10.3 billion by 2100.
Current projections indicate that 97% of this population increase will occur in low-and-middle income countries (LMICs).
What Does This Mean for Retinoblastoma?
Put simply, the total number of patients with retinoblastoma will increase.
The best available evidence traditionally indicates that the incidence of retinoblastoma is constant worldwide: for every 16,000 children born, one will develop retinoblastoma. Currently, this translates to about 9,000 new retinoblastoma patients per year.
However, emerging data from Europe suggest that incidence may be rising in some settings. This is driven by an increasing proportion of familial cases as more survivors with heritable disease reach adulthood and have children.
Still, most affected children live in LMICs, which is not surprising since those populations are generally bigger and have higher birth rates. The projected population boom means that over the next several years, we can expect even more kids with retinoblastoma in LMICs.
How Many Children Survive Retinoblastoma Worldwide?
This is problematic, because survival rates for retinoblastoma are much lower in LMICs compared to the rest of the world. In some regions, as few as 3 in 10 children with retinoblastoma will survive. Barriers to survival in LMICs include low awareness of presenting signs of retinoblastoma, combined with poor access to, and availability of, retinoblastoma care.
In recent years, there has been a notable expansion in global collaboration, including increased research activity, and multi-centre data collection efforts. Childhood cancer is also a growing priority for organisations such as the World Health Organization. These initiatives have improved our understanding of retinoblastoma outcomes, and contributed to documented gains in survival.
Survival of retinoblastoma in Kenya was approximately 30% in the early 2000s, based on cohort data from Kenyatta National Hospital. Following implementation of the Kenya National Retinoblastoma Strategy, survival has increased to ~70%.
However, it is important to recognise that these reported survival rates are typically derived from children who reach specialised treatment centres and are captured within research networks. They therefore do not fully account for children who are never diagnosed or who are unable to access care – groups that are more likely to experience poor outcomes.
As a result, reported improvements in survival likely overestimate true population-level survival in many LMICs.
In contrast, in high-income countries (HICs), more than 95% of children with retinoblastoma will survive to lead healthy lives. Clearly, we know how to cure retinoblastoma. We simply need methods to effectively and consistently apply that knowledge in low-resource settings.
How Do We Monitor Global Retinoblastoma Care?
A tool that tracks the availability of retinoblastoma treatment around the world is the One Retinoblastoma World map (Figure 1). Freely available online, the map was created to collect global data on children’s retinoblastoma treatment:
- Where (e.g. what hospitals).
- How (e.g. with what resources and expertise).
- How many (e.g. patient numbers)
A valuable descriptive tool, the map is also part of a broader, evolving global data ecosystem supporting collaboration, benchmarking, and accountability across retinoblastoma care programmes worldwide.
The map currently documents information from 178 retinoblastoma treatment centers in 76 countries. They represent 111 centers in LMICs and 67 from HICs. Based on 2022 estimates, approximately 7,264 new patients are expected each year in LMICs, and 804 in HICs.
The shared data provides important insight into where and how retinoblastoma care is delivered around the world. It also highlights that documenting available services is only one step toward understanding whether every child who needs care is actually receiving it.
The One Retinoblastoma World Map documents available treatment at 178 retinoblastoma treatment centers in 76 countries.
Why Do Some Children Never Reach Care?
Although the One Retinoblastoma World map has expanded our knowledge of global care provision, a fundamental challenge remains: many children with retinoblastoma may never present to a treatment centre at all. In 2026, delayed or missed diagnosis is recognized as one of the most important factors underlying disparities in survival between LMICs and HICs.
Barriers to early diagnosis are complex:
- Limited public and primary healthcare awareness of the early signs of childhood eye cancer.
- Delays in referral.
- Structural barriers, such as high costs of transportation or treatment.
- Access to specialized services.
All these challenges and more may hinder a family’s access to care.
As a result, children may present late with advanced disease, or not reach care at all. Strengthening awareness at the community and primary healthcare level, alongside reducing barriers to access, is therefore critical to improving early diagnosis and survival.
At the same time, the map highlights important differences in the availability of resources and expertise across centres. A major disparity between centers in LMICs and HICs is in the provision of key diagnostic equipment such as fundus photography and eye ultrasound – these modalities are more commonly available in HIC centers. Focal therapy (laser and cryotherapy) are also more common in HIC centers, limiting the possibility of eye and vision salvage for patients in LMICs.
A devoted father shares a moment of joy with his daughter during time at home between retinoblastoma treatments.
How Can Capacity For Retinoblastoma Care Be Improved Around The World?
National strategies are increasingly being used to identify country level strengths and gaps, and to guide coordinated improvements in retinoblastoma care. Working nationally, agreed upon guidelines can give centres the framework to follow to deliver high quality care. The situational analysis provided by the One Rb World map can help identify where key investments in infrastructure, workforce and training can have the greatest impact.
The National Strategy model has been implemented in Canada and Kenya. More recently, Ethiopia and Ghana have started their own strategies. These initiatives demonstrate the value of coordinated country-level planning, grounded in local data.
Of course, improving availability of retinoblastoma care is only one piece of the puzzle. Ensuring that care is of good quality and adheres to evidence-based guidelines is paramount, as is maintaining resources in working order.
Strengthening early diagnosis should be considered a central component of any capacity-building effort, given its critical role in determining survival outcomes. Awareness among parents and healthcare workers, clear referral pathways, and integration with primary care are all needed to achieve timely diagnosis and care.
Looking ahead, as survival improves in LMICs, new challenges will emerge.
Increasing numbers of retinoblastoma survivors will require long-term, specialized survivorship care, including genetic counselling, surveillance for second primary cancers, and support for lifelong health needs. Expanding capacity must therefore extend beyond initial treatment to include comprehensive survivorship care, ensuring that gains in survival translate into improved long-term outcomes for patients and their families.
Addressing these interconnected challenges will require sustained global collaboration. Aligning efforts across awareness, diagnosis, treatment, and survivorship, as well as leveraging shared data platforms such as the One Retinoblastoma World map. Together, the retinoblastoma community can work toward more equitable outcomes for all children, regardless of where they are born.
A panel session at ISOO Africa held in Mombasa, Kenya in August 2023 – the first time the International Society of Ocular Oncology has hosted its world congress in sub-Saharan Africa.
Our Global Community Responds
Helen’s analysis makes one truth clear: we already know how to save children with retinoblastoma. Our great challenge is ensuring every child, everywhere, can benefit from that knowledge.
This global challenge was centre stage.at the 2024 One Retinoblastoma World conference in Honolulu, Hawaii.
Across three days of collaboration, the international Rb community came together to examine the issues Helen presents: access to care, timely diagnosis, and the urgent need to close survival gaps between high- and low-resource settings.
Day Two turned a powerful spotlight on the provision of life-saving care worldwide. Clinicians and advocates shared stark realities – children in low-income countries are still far more likely to be diagnosed late, when cancer has already spread beyond the eye, making treatment more complex and costly, and survival less certain.
SIOP President and dedicated Rb oncologist, Guillermo Chantada, underscored the challenges and opportunities to overcome them in the opening Keynote. He continued the discussion with a multidisciplinary panel including oncology, ophthalmology, and nonprofit perspectives.
Despite the barriers, these talks and conversations were defined by action: national strategies, international partnerships, and resource-adapted care models are already improving outcomes in regions previously left behind.
On Day Three, the focus turned to early detection and advocacy – critical steps in preventing advanced disease and avoidable death. From community awareness campaigns and healthcare provider training to the innovative, low-cost Arclight ophthalmoscope bringing eye exams to rural settings, speakers showed how timely diagnosis can transform treatment and survival.
Discussions mirrored Helen’s central message of cure for every child. Experts emphasized that while appropriate specialist treatment is vital, survival depends on diagnosing cancer before it spreads beyond the eye – when it becomes far more dangerous and difficult to cure.
In the final keynote, New York Times journalist Pamela Paul reflected on the lifelong impact of childhood cancer, connecting personal stories to global responsibility. Her message reinforced a growing understanding across the field: solving the global retinoblastoma burden requires awareness, understanding and advocacy; medical progress; patient engagement; sustained collaboration; and shared commitment across borders.
Together, the many conversations of One Rb World 2024 reflect a rising tide of energy to deeply understand the challenges of access to care and barriers to cure, and build practical responsive solutions. We continue to unite our global community in the mission to ensure that where a child is born no longer determines whether they live or die from eye cancer.
A Global Conversation at One Rb World 2024. L-R: Pamela Paul (panel moderator), Jesse L. Berry (Children’s Hospital Los Angeles), Michael Sullivan (Royal Children’s Hospital, Melbourne), Luke Thomas (World Child Cancer), and Guillermo Chantada (President, International Society of Paediatric Oncology).
Watch Guillermo Chantada’s keynote address and the full Global Conversation.
Join the Global Movement at One Rb World
Where global collaboration comes to life.
One Rb World brings together patients, survivors, families, clinicians, researchers, and advocates. This is a unique space to share knowledge, confront challenges, and shape solutions that improve diagnosis, treatment, and lifelong care worldwide.
We invite you to join us at the 8th One Rb World conference, taking place September 12–14 in San Antonio, Texas, just ahead of the International Society of Paediatric Oncology World Congress.
This event is much more than a conference – it is a global community built on shared experience, open conversation, and collective action. From advancing timely diagnosis and access to care, to supporting survivors and families at every stage, One Rb World is dedicated to improving outcomes for every person affected by retinoblastoma, everywhere.
Children of all ages are welcome. We are proud to offer a child life program over all three days for patients, survivors, siblings, and children of adult survivors and conference speakers. As well as free play for all ages, planned activities led by child life professionals will help children explore, understand, and live well with their individual experiences of eye cancer.
Join us to learn, connect, and co-create the future where timely diagnosis and life-saving care are the standard experience, no matter where the child lives.
About the Author
Dr. Helen Dimaras holds a PhD in Molecular & Medical Genetics, and completed post-doctoral training in clinical trials and global health. Her work has contributed to the understanding of the molecular genetic development of the childhood eye cancer, retinoblastoma.
She leads a research program that lies at the intersection of global health, cancer genetics and clinical research, and focuses on determining how to deliver optimal retinoblastoma care worldwide and improve patient outcomes. She is Scientist and Director of Global Eye Health Research at The Hospital for Sick Children, and Professor at the University of Toronto.
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