Breaking Barriers to Early Diagnosis: Revisit a Year of Action
Saturday February 15, 2025
Early Diagnosis is the foundation of effective retinoblastoma and second cancer care. Yet, many families and survivors around the world face complex, delayed diagnostic journeys. WE C Hope CEO, Abby White, reflects on the 2024 #RbEarlyDiagnosis campaign, exploring key themes, family and medical perspectives, global collaborations, and the progress our One Rb World community is making toward faster access to life-saving care.
From Arclights to Zebras: #RbEarlyDiagnosis
Early diagnosis is the cornerstone of effective retinoblastoma and second cancer care. Yet for most families and Rb survivors around the world, the journey to that diagnosis is complex and slow. Timely care requires awareness and knowledge; clear communication, skilled eye screening delivered at primary care; and efficient, supportive referral pathways.
Throughout 2024, our Alphabet of Hope focused on #RbEarlyDiagnosis, spotlighting key aspects to this critical stage of patient care. Our year-long campaign included 26 words addressing barriers to early detection and diagnosis, and ways to overcome those challenges, saving more lives and improving outcomes.
As part of the campaign, we published 17 in-depth articles on this blog, exploring family, survivor, and healthcare worker experiences; and practical ways to achieve earl diagnosis and care. Now, as we celebrate International Childhood Cancer Day (February 15) and action taking place around the world to advance care, we revisit the campaign. Join us to reflect on key themes, the progress our One Rb World is making together, and the path ahead.
Watch our Alphabet of Hope 2024 video, a powerful recap of the entire #RbEarlyDiagnosis campaign.
The Foundation of Early Diagnosis and Optimal Care
Retinoblastoma can only be diagnosed early when people know children can develop eye cancer and treatment is possible. Life-saving awareness starts with acknowledging and understanding childhood cancer in general, and the solidarity of a childhood cancer community speaking up for change.
With a sunny, hopeful heart, the gold ribbon is a unifying symbol of paediatric oncology worldwide, a banner of hope embracing the individual journey and collective action to improve care. Within this broader movement, retinoblastoma is one of many childhood cancers that need greater awareness for early detection.
The gold ribbon movement connects families, survivors, and advocates across different diagnoses to push for parent and primary care awareness, research funding, policy change, support, and much more.
WE C Hope stands alongside other organizations championing early diagnosis and care. In April, we explored the solidarity, strength, and synergy of the gold ribbon. Together, as one global community, we aim for the day when no child, survivor, or their family is left behind in the fight against cancer.
Achieving early diagnosis requires a solid foundation of empowered parents and survivors, informed healthcare providers, robust referral systems, and equitable access to care. Without these elements, children and survivors will continue to face delayed diagnoses and life-threatening disease progression.
In many regions, disparities in healthcare access mean curable children experience unnecessary delays, increasing the risk of vision loss, more intensive treatment, and too often, preventable death.
In January, we explored how early diagnosis is the bedrock of retinoblastoma care. Strengthening the four pillars of awareness, education, screening, and referral needs collaboration across medical, advocacy, and policy spheres. Only together can we bridge the gaps to ensure every child – no matter where they live – has the best chance at prompt, life-saving care.
Family Stories: Empowered Action Saves Lives
Most children with retinoblastoma are diagnosed because a parent notices something unusual about the appearance of their child’s eye and acts on their concern – even when they don’t know the significance of what they see. But the time-lag can be weeks or months from first observing a white glow, turned, eye, different coloured irises, or other signs, and seeking medical advice. Delays are often compounded by low awareness and slow action among primary care providers, causing parents acute distress before, during, and after diagnosis.
This deeply personal aspect of the diagnosis journey was central to many stories we shared throughout 2024.
Critical clues to a child’s eye cancer hide in plain sight. Around the world, parent and physician knowledge, and ability to spot the silent signs are vital to early detection, swift referral, and prompt diagnosis.
A glint or a squint could be your hint. In April, we met Logan (USA), Liam (Kenya), Pooh (Vietnam), Aidan (Canada), and Rowan (USA) whose parents’ curiosity, nagging concern, and action were pivotal to their diagnosis and life-saving, sight-saving care. Their journeys highlight how knowledge empowers parents to advocate for appropriate medical care early, even when signs are subtle and doctors are unconcerned.
Delayed diagnosis and care puts young lives in jeopardy. In May, World Retinoblastoma Week introduced us to Hannah and Katie, two young girls at opposite ends of the world whose diagnoses were dangerously delayed, with profound life-threatening consequences.
Their stories are a stark reminder that retinoblastoma is not just an eye disease – this cancer can spread rapidly when not identified promptly and treated appropriately. Their families’ experiences underline the urgent need for medical professionals to act on parent concerns without hesitation.
Gut Feelings Matter – the road to a child’s eye cancer diagnosis often begins with a parent hearing and acting on their quiet inner voice. In July, we explored what instinct and intuition are and how they differ, why they are so important for early detection, and why primary care providers should take them seriously.
We also met Brady (USA), Noa (Spain), Connor (Canada), and Macy (USA), whose mothers followed their gut feelings – even when doctors repeatedly told them not to worry. Their experiences make it clear: listening to parent concerns informs medical care and saves children’s lives and sight.
Finally, as festive candles and fairy lights brightened winter’s gloom, we explored how life-saving holiday photos – and sharing stories of those photos – can help detect retinoblastoma early. We met Aidan (Australia), Lele (China), Jordan (USA), and Sera (Fiji), all diagnosed thanks to holiday photos or festive lights capturing cancer’s pearly glow in their eye.
We recapped the signs that should trigger investigation, and underscored the need for medical professionals to listen carefully to parents, consider all possibilities, and assess the child with a fundal reflex test. Prompt referral to ophthalmology is best to thoroughly assess for retinoblastoma.
- A Glint or a Squint Could Be Your Hint: Knowledge is Key to Retinoblastoma Early Diagnosis
- Between Shadow and Light: Young Lives in Jeopardy from Retinoblastoma
- Gut Feelings Matter: How Parent Instinct and Intuition Detect Childhood Eye Cancer Early
- Angels and Zebras: How Life-Saving Holiday Pics Reveal Children’s Rare Eye Cancer
Sera, from Fiji, experienced referral delays to expert care in Australia. After treatment, she struggled to access follow-up care.
Supporting Primary Care Professionals
Primary care providers are often the first point of contact when a parent seeks medical advice for their child, or a survivor has concerns about their own health. Yet, many general practitioners, paediatricians, optometrists, and other primary healthcare workers are unfamiliar with retinoblastoma, leading to critical missed diagnoses and referral delays.
Our four-part Primary Care series explored these challenges in detail.
Primary Care, Retinoblastoma, and Second Cancers underscored the essential role of frontline healthcare workers in timely diagnosis. We explored the challenges they face in recognizing signs and securing a swift referral, the importance of listening to and acting on parent and patient concerns, and the need for education targeting primary care providers.
When parents and survivors report signs and symptoms to their primary doctor, prompt referral is vital for timely, optimal care. In Referral for Possible Retinoblastoma or Second Primary Cancer, we explored who needs referral and when, and the key elements of an effective referral process – for children with possible eye cancer, and survivors throughout life.
Strabismus (squint or turned eye) is one of the most common signs of retinoblastoma, and also one of the most misunderstood and overlooked signs in primary care, often dismissed as a benign phase of eye development. In The Life-Saving Power of a Squint, we met Evalynn (USA), Gabriel (Ecuador), Abby (USA) and John (Kenya) who all developed strabismus due to retinoblastoma. Sandra Staffieri, orthoptist and Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examined turned eye in detail and answered the key question – when should parents and doctors be concerned?
Early diagnosis is the best cure, but referral delays are common worldwide. In Wiki Wiki!: Accelerating Referral for Retinoblastoma and Second Cancers, we explored common causes of delay, how to avoid them, and speed up referral for optimal care.
Parents and survivors trust medical providers to listen, investigate, and act quickly when life and sight may be at risk. By arming primary care providers with knowledge, skills, and confidence to act decisively, we can ensure more children and survivors receive the timely care they need.
A fundal reflex examination is performed in a darkened room, the ophthalmoscope in one hand and a toy in the other to attract the child’s attention. The target is very helpful as no child wants to look at a bright light, but they will look at a toy – preferably something with interesting sounds and visual effects, encouraging the child to look exactly where the examiner needs them to.
Our sincere gratitude to this Rb family, who are keen to support awareness-raising activities. Their local doctor dismissed their concerns without doing a fundal reflex exam – those preventable delays have cost their son and family dearly.
The Arclight Partnership, Familial Rb, and Lifelong Care
Early diagnosis is the best cure, but many children do not have easy access to a primary care provider. Particularly in lower-income countries, where early diagnosis is most vital. For these children, community-based eye health and screening programs become essential life-saving hope.
Throughout 2024, our trifold partnership with the Arclight Project and KnowTheGlow delivered low-cost, solar-powered eye screening tools to community eye health programs in Low and Middle Income Countries (LMICs). With the lightweight, portable Arclight ophthalmoscope, healthcare workers can easily examine children’s eyes and detect leukocoria, a hallmark sign of retinoblastoma. Smartphone connection enables image capture and review, and virtual consultation.
With our supporters’ help, we’re equipping health workers across Africa and Asia with the tools, training, and knowledge they need to find possible eye cancer and other potentially blinding conditions early, and refer children quickly.
In January, leukocoria awareness advocate and KnowTheGlow founder, Megan Webber, introduced the Arclight Partnership, exploring the power of glow awareness and innovation in detecting retinoblastoma. She discussed why glow awareness and community eye screening are key to life-saving early detection and referral in these locations, and highlighted KTG’s work in the partnership, empowering the public and parents with knowledge.
In March, we explored The Arclight and Fundal Reflex Test in depth with Dr Andrew Blaikie, ophthalmologist and clinical lead for the Arclight Project at the University of St Andrews, Scotland. He described the importance of this simple exam, and how the Arclight improves eye health access and outcomes for children with eye cancer around the world. He emphasized the importance of correct examination technique, and training for primary care providers so they can confidently assess a child’s eyes and review their findings, recognize red flags, and refer quickly.
In June, Megan Webber teamed up with WE C Hope USA President, Marissa D. Gonzalez to share some pearls of light on the pathway to early detection. They told of how our Arclight Partnership evolved from a breakfast meeting in Mombasa, Kenya, the year before. And Marissa shared news from some of the countries where we’re making progress for children in Africa and Asia.
During September’s Childhood Cancer Month, we emphasized the importance of genetic knowledge and planned screening for familial retinoblastoma and related second primary cancers. Familial Rb affects more than one person in a family, and individuals with a heritable RB1 gene mutation have increased cancer risk throughout life. Finding cancer early is vital for the best treatment and outcomes. Revisiting blogs from ocular oncologist Alison Skalet M.D. PhD, and myself, we explored screening for high-risk individuals at all stages of life.
- Illuminating a Child’s Health: The Power of Glow Awareness and Innovation in Detecting Retinoblastoma
- The Arclight and Fundal Reflex Test: Shining the Light on Retinoblastoma
- Pearls of Light: The Pathway to Retinoblastoma Early Detection
- Screening for Familial Retinoblastoma and Related Second Primary Cancers
Donate an Arclight Today to Help Save a Child’s Life
Each $25, $50, or $75 gift funds a high-tech solar powered Arclight ophthalmoscope, and training to examine children’s eyes and detect eye cancer early.
Please help us reach our goal of providing 500 Arclights across nine low and middle income countries in 2025, and low resource communities in the USA.
One Rb World: A Global Gathering for Progress
In October 2024, WE C Hope USA hosted the 7th One Rb World conference in Honolulu, Hawaii, with 175 participants gathered in beautiful Waikiki, and many more online. Family members, survivors, medical professionals, researchers, and advocates united to share knowledge and experience, and drive global progress in retinoblastoma care.
In May, as anticipation mounted for the conference, we explored how community and shared responsibility create the best retinoblastoma care. With an emphasis on our early diagnosis theme, we looked at some of the challenges facing our One Rb World, and for each, three ways we can work together to advance care for everyone.
When Rb Care Co-ordinator Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of Rb centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination on her trip was not even on her itinerary.
One Retinoblastoma World was a new realm of discovery, and 12 years on, the impact continues. In August 2024, Sandra reflected on her experience of the first meeting in London, advances in early diagnosis research since then, and her journey from participant to 2024 scientific program co-chair.
One Rb World 2024 was a global call to action – early detection and advocacy were prominent in the program. From eye screening in rural communities to family experiences and life-saving parent outreach, this was a powerful expression of global community, collaboration, and hope. In December, Marissa D. Gonzalez, 2024 Conference Event Chair, shared highlights from the inspiring presentations, life-changing progress, and extraordinary stories that shaped the early detection session – and much more.
Our KnowTheGlow Around the Globe panel answered audience questions during the open-floor part of the session, including from WE C Hope board member ant genetic counsellor, Melissa Mills, who expressed hope that progress in newborn genetic screening will incorporate RB1 screening to enhance early detection.
Expanding Global Collaborations
WE C Hope firmly believes that working together is the best way to make rapid progress for children, survivors, and their families affected by retinoblastoma. We are members of several global organizations dedicated to childhood cancer, ocular oncology, and blindness prevention, all helping to advance early diagnosis; timely, appropriate care; family support; and survivor care worldwide.
- International Society of Paediatric Oncology (SIOP) – Driving global childhood cancer research, advocacy, and policy change.
- International Society of Ocular Oncology (ISOO) – Advancing eye cancer treatment and collaboration among specialists.
- International Agency for the Prevention of Blindness (IAPB) – Promoting global eye health and equitable care through collaboration and advocacy.
- KnowTheGlow (KTG) – Raising global awareness of leukocoria as a sign of childhood eye disease.
- Childhood Cancer International (CCI) – Advocating for children with cancer, and supporting parent/survivor-led organizations worldwide (application in progress).
We Are One! A Message of Global Unity
In January 2016, Childhood Cancer International (CCI) launched the We Are One campaign, inviting children worldwide to sing the chorus of a specially commissioned song to mark International Childhood Cancer Day. More than a million voices joined together in a moving display of solidarity. This powerful video was released on February 15, 2016 – just five weeks after the campaign launched.
Disney’s Frozen composer, Christophe Beck, created the song, which was performed and promoted by singing child stars around the world. The official music video – a montage of children’s contributions – was created by acclaimed director Johan Söderberg, who has worked with David Bowie, Beyoncé, Madonna, and more.
When children come together with one voice to raise awareness and share support, there is so much hope for the world!
Help Families Cope, Heal, and Thrive with #RbChildLife
Referral is just the beginning for a child with eye cancer. Once they reach specialist care, a big neglected challenge is ensuring they receive comprehensive support throughout diagnosis and treatment. Our #RbChildLife campaign, launched in January 2025, focuses on the emotional, social, and developmental needs of children and families navigating retinoblastoma.
Cancer care involves repeated, invasive medical procedures that can be distressing for babies and young children. Without effective supports, they can become quickly overwhelmed, impacting natural development and lifelong mental health.
Child life programs help reduce fear and anxiety, empower families, and foster resilience. WE C Hope believes child life should be integrated into all aspects of retinoblastoma clinical care. Currently, most ophthalmology programs in high income countries do not offer child life services, and most paediatric oncology programs in LMICs have no child life professional on staff.
Every four weeks over the next two years, we will highlight simple approaches and vital supports that enable children to thrive during and beyond treatment. As well as some ways WE C Hope helps bring child life skills to children around the world. Follow our Alphabet of Hope, blog, and social media to discover more and get involved.
The journey of retinoblastoma care continues! Together, our One Rb World is making progress in early detection and treatment. In 2025 and 2026, we have the opportunity to bring meaningful change for child life in ophthalmology and children’s eye cancer care. Please join us on this exciting road ahead!
How to Get Involved
- Follow the Alphabet: Look for new letters shared every four weeks on our Facebook Page and Instagram.
- Join the Conversation: Add your voice to polls and quizzes, and share your own experiences as we explore each new mini-theme.
- Search and Share: Follow the hashtags #AlphabetOfHope and #RbChildLife to discover, share, and talk about the latest content.
- Dive Deeper: Explore each letter on our Alphabet of Hope pagee for blogs, videos, and other resources full of practical child life tools and advocacy tips you can use wherever you are. Find this page quickly at wechope.org/AlphabetOfHope
Be part of #RbChildLife! Together we can ensure every child and family receives the support they need to thrive – body, mind, and spirit.
Children in Kenya learn about and gain confidence with the medical procedures they experience during medical care by practicing the steps on a medical play doll.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
You May Also Like…
If In Doubt, Check It Out: Common and Not-So-Common Signs and Symptoms of Retinoblastoma
Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight. For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.
Hawaii Says “ALOHA” to the 7th One Rb World Conference and Global Retinoblastoma Community
The shores of Waikiki Beach welcomed 175 guests to the 7th One Rb World conference this month, and more online, as Honolulu played host to this incredible meeting of retinoblastoma patients, survivors, families and medical professionals. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the social gathering and Day One of the program in the first instalment of this three-part conference review. Parts 2 and 3 are linked.
Light Up for Rare and Share Your Retinoblastoma Colours on February 29!
Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births. Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community! Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.
From One Child to One Rb World: Our Foundation Story
Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) evolved from the generosity of one family sharing hope with another at opposite ends of the earth, creating light within the darkness that retinoblastoma brought to their lives. Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.
Child Life for All Ages: Empowering Children with Cancer to Thrive
Retinoblastoma is a challenging journey for children and their families, often deeply affecting emotional and physical well-being long after treatment ends. Tailored support enhances quality of life during cancer care and beyond. Rb survivor and WE C Hope founder, Abby White; and Child Life Specialist, Morgan Livingstone, explore how child life specialists empower children of all ages and their families to cope, heal, and thrive.
Leave a Reply
Want to join the discussion?Feel free to contribute!