Primary care providers are pivotal in the timely diagnosis of retinoblastoma and related second cancers. They are usually the first contact for parents and survivors concerned about signs and symptoms. WE C Hope CEO Abby White explores their key role, the challenges they face in recognizing signs and securing a swift referral, and the need for education targeting primary care providers.
Though small and far-flung, our global retinoblastoma family stands strong together. Members of WE C Hope USA’s Board of Directors and past One Rb World participants explain how this conference unites us and strengthens ohana. In trial, grief, hope, and triumph, we share and learn from our collective experience, support one another, and strive to care for all.
Early diagnosis of retinoblastoma saves children’s lives, and offers the best opportunity for safe vision saving therapy. But worldwide, many children are diagnosed late. KnowTheGlow founder, Megan Webber, and WE C Hope USA President, Marissa D. Gonzalez discuss how our early detection partnership evolved, and update on the progress we’re making for children in Africa and Asia.
Laulima signifies the power of cooperation, teamwork and collective effort. This Hawaiian concept of many hands striving together drives the One Rb World conference, taking place in Honolulu this October. Members of our 2024 conference team explain how laulima inspires their work for this global community, united to advance retinoblastoma care for all.
Screening children’s eyes with the Fundal “Red” Reflex is key to early detection of retinoblastoma, but until recently, it was difficult to deliver in many countries. Dr Andrew Blaikie, ophthalmologist and clinical lead for the Arclight Project at the University of St Andrews, describes the importance of this simple exam, and how the Arclight improves eye health access and outcomes for children with eye cancer around the world.
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.
In the first half of this article, we met Rati and Daisy, two young children with retinoblastoma who inspired the foundation of Daisy’s Eye Cancer Fund in 2004. In part 2, Rb Survivor and Daisy Fund co-founder, Abby White, reflects on what happened after Rati died – our journey to World Eye Cancer Hope (WE C Hope), One Rb World, and advocacy for all children, survivors and families.
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.
One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support. Previous participants share why the event is so valuable. Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.
Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.
