Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.
Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to better outcomes for children, with less intense treatment. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Below, we share sessions from the 2017,2020, and 2021 meetings.
On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.
As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.
Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.
A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.
Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.
Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.
Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.
Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
