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.
From the moment a child is diagnosed with retinoblastoma, even from when their parent first takes them to the doctor, life is a rollercoaster, a whirlwind of information, decisions, and grief. Sandra Staffieri describes her role as Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, how the role evolved, challenges faced, and the unexpected joys experienced despite it all.
When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, WE C Hope CEO, Abby White, shares key points to consider when discussing retinoblastoma, and how to respond well.
How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.
After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and the insight, wisdom and motivation this literary project brings to the retinoblastoma community.
2020 has been eventful and challenging for the whole world. Throughout, WE C Hope has continued to serve, unite and advance our global retinoblastoma community. WE C Hope USA President and retinoblastoma survivor, Marissa Gonzalez, reflects on the year’s highlights with thanks, and shares some plans for the coming year.
In October, a diverse community of survivors, families and medical professionals came together at One Retinoblastoma World for two days of inspiring panels, research and calls to action. WE C Hope USA President Marissa D. Gonzalez shares a recap of the fifth global conference, and her vision for next year’s event in Hawaii.
Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 3 focuses on medical care and support.
Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 2 focuses on assistance, access and technology.