90% of children with retinoblastoma are diagnosed after a parent or family member notices a white pupil (leukocoria) or a turned eye (strabismus). But in many communities, detection of these signs, referral to an eye doctor, and diagnosis come far too late.
Imagine you earn just a few dollars a day, with several children to care for. Your baby’s eye sometimes looks strange in dim light or photos, but they show no signs of pain, illness, or loss of sight. Would you choose to spend what little money you have on a medical appointment, or on food and daily essentials?
In Low- and Middle-Income Countries (LMICs), delayed diagnosis often ends in tragedy. World Eye Cancer Hope is working to ensure more children are diagnosed and referred to specialist care early.
The Critical Need for Early Diagnosis
For children with retinoblastoma in LMICs, early diagnosis is their best – and often only – chance of cure. When the cancer is caught early and confined to the eye, removing the affected eye can save the child’s life. Safely attempting to save the eye and vision may also be possible. But this cancer spreads rapidly and when diagnosis is delayed, it becomes much harder to treat.
Despite growing awareness of childhood cancer, public and primary healthcare knowledge of retinoblastoma remains very limited. Diagnosis is often delayed due to a range of obstacles:
- Low public awareness and health literacy.
- Limited access to accurate health information.
- Initial reliance on traditional medicine.
- High cost of medical visits, transport, and care.
Families may not own a smartphone or camera, and may share devices within a village or community. The glow captured in photos may be seen by someone who doesn’t understand its meaning. Caregivers who see the glow only with their naked eye in dim light are frequently doubted by other people, who see no glow. Without education, families may dismiss or overlook signs until the cancer becomes very advanced.
Even when parents do act quickly, long distances to care, cost of treatment, and stigma can cause devastating delays. In some communities, removing an eye is associated with shame or punishment. Children who could have been cured die in pain because stigma and misinformation overrule the evidence of life-saving treatment.
Delayed diagnosis leads to greater suffering and far higher treatment costs. Untreated retinoblastoma mutilates the child’s beautiful young face and body, causing intolerable physical and mental pain. The burden on families and healthcare systems is enormous – and entirely preventable.
Early Detection within the KNRbS
Through the Kenya National Retinoblastoma Strategy (KNRbS), we’ve supported widespread public and healthcare education to raise awareness of the white pupil and turned eye as signs of possible eye cancer. Working with the Ministry of Health, the KNRbS has:
- Incorporated awareness messaging, eye exam steps, and referral prompts into the Mother and Child Health Booklet, which is distributed to and used by health workers and families across Kenya.
- Delivered educational posters to all maternal and child health clinics and immunisation centres.
- Provided public education through prominent national media coverage across TV, radio, newspapers, and magazines, featuring children’s stories and interviews with doctors, nurses, parents, and survivors.
- Organized and hosted educational seminars for health workers as part of continuing medical education events.
Early detection and referral, combined with improved medical care and family support, has helped raise survival in Kenya from 26% in 2008 to 70% today.
Now, we are taking that success global.
While in Kenya in August 2023 for the first ISOO Africa congress (International Society of Ocular Oncology), WE C Hope USA President, Marissa Gonzalez, was interviewed on several prime-time TV programs about her Rb experience and advocacy, alongside Dr. Kahaki Kimani, retinoblastomas specialist at Kenyatta National Hospital, Nairobi. This is her interview from Citizen TV.
The Arclight Partnership
Across much of the world, the biggest barrier to early detection is simple: no one is looking carefully into the child’s eyes.
The Arclight Ophthalmoscope is changing that. This low-cost, solar-powered, pocket-sized device allows health workers to examine children’s eyes quickly and effectively in even the most remote settings.
Created by Dr. Andrew Blaikie and his team at the University of St Andrews in Scotland, the Arclight is:
- Affordable: At less than $20 for the lowest income countries, it costs a fraction of traditional ophthalmoscopes.
- Sustainable: Solar powered and easy to maintain, ideal for low-resource settings.
- Portable: Lightweight and pocket-sized, perfect for outreach and travel.
- Multi-functional: It also serves as an otoscope and clinical light source.
- Tech-enabled: Can pair with a smartphone to capture images for review later, virtual consultation, training, and referral.
The Arclight can be used by nurses, clinical officers, and trained community health workers. Its simplicity and versatility make it ideal for screening children during community outreach or immunisation visits.
A Global Partnership for Local Impact
In late 2023, WE C Hope joined forces with The Arclight Project and KnowTheGlow. We distributed 300 Arclight devices across six countries – Tanzania, Kenya, Uganda, Ghana, Nigeria, and Nepal. Each device is paired with training provided by the Arclight Project, and awareness materials tailored by KnowTheGlow to each country’s needs.
The devices now support frontline screening in the community and at immunisation visits. KnowTheGlow has created country-specific materials to raise public awareness and ensure parents know what to do if they see the early signs of white glow or turned eye. Glow Ambassadors in each country help advocate for greater awareness and program support.
Training, implementation, and research are ongoing, and together, we are working to:
- Increase awareness of early signs.
- Empower local healthcare workers.
- Strengthen referral pathways.
- Reduce avoidable blindness and death.
The Arclight Partnership is saving lives – one light, one look, one child at a time, and we are working hard to expand its reach around the world.
Read More
Articles about the Arclight Partnership on our blog:
Early Detection Focus at One Rb World
Early diagnosis is a cornerstone of optimal care – a global challenge with no single solution.
The One Retinoblastoma World Conference brings together parents, survivors, doctors, researchers, and advocates from around the globe. This unique gathering focuses on retinoblastoma care and research, including early detection. Though it may seem an obvious priority, this topic is often overlooked at global eye cancer conferences.
At each One Rb World meeting, speakers and participants share experiences and practical strategies to:
- Improve early detection, especially in low-resource settings.
- Overcome stigma and barriers to care before and during diagnosis.
- Engage families, survivors, and medical professionals as partners in early diagnosis and treatment.
The One Rb World community is united in its belief that early diagnosis is the bedrock of care and saves lives.
Sessions at the 7th One Rb World meeting in October 2024 highlighted tools like the Arclight, personal stories from parents, and international research into the best ways to educate, engage, and empower communities.
One Rb World is the only global retinoblastoma meeting that consistently prioritizes the voices of parents and survivors in these conversations. It is also the only retinoblastoma-focused conference that treats early diagnosis as a shared responsibility and key global health priority.
Read More
Articles about the Arclight Partnership on our blog:
A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three | Page 1
Retinoblastoma Awareness, Screening and Early Detection at One Rb World
Join One Rb World 2026 in San Antonio, Texas
National and global collaboration between retinoblastoma specialists, researchers, parents, survivors, and other advocates can dramatically improve care for each child with eye cancer, survivor, and their family.
If you would like to join our global community sharing knowledge and experience, learning from one another, addressing early detection and other priority subjects together, we welcome you to the 8th One Rb World meeting, September 12-14, 2026 in San Antonio, Texas, USA. The meeting will be held just before the International Society of Paediatric Oncology World Congress which takes place 15-18 September, 2026 in San Antonio.
One Rb World is community, conversation, and collaboration for optimal lifelong care. Children are welcome too – One Rb World is proud to offer a full child life program for Rb patients, young survivors, siblings, and children of adult survivors and conference speakers!
Why Early Detection Matters
Every day, children are diagnosed too late and die because no one recognised the signs in time. By working together to educate families and health workers, and by equipping communities with the right tools, we can:
- Save children’s lives.
- Increase opportunities to preserve sight.
- Reduce trauma.
- Lower the cost of care.
- Empower families to act with confidence.
With your support, World Eye Cancer Hope is expanding early detection in LMICs around the world. Together, we can ensure more children are diagnosed early, treated effectively, and given every chance to live a full and healthy life.
