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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.
Worldwide, many children with eye cancer are diagnosed late. Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy. Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how Know The Glow and WE C Hope are helping to ensure children receive timely, effective care.
We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs Dr. Jesse L. Berry, Children’s Hospital Los Angeles, USA; Sandra E. Staffieri PhD, Royal Children’s Hospital Melbourne, Australia; and Marissa D. Gonzalez, World Eye Cancer Hope USA.
Childhood eye cancer and its lifelong impacts can be a lonely, overwhelming experience. Connecting with others who understand is a healing balm for many. On November 4th, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California. Marissa D. Gonzalez, bilateral Rb survivor and WE C Hope USA President, shares highlights from another delightful Family Day.
Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
