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.
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.
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.
The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.
Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Retinoblastoma can have a profound impact on family relationships, during diagnosis and treatment, and throughout life. Linda Conyard MGestT delves into the factors affecting relationships, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
Multicentre research is complex. Challenges can arise in the process of bringing its many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
Retinoblastoma is highly stressful for most patients and their families. Too often, it is a traumatic life experience that has long term impacts on mental health. Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.