Dan Gombos presents on the challenges of obtaining effective care for the adult with distant history of Rb. The slide behind him is titled “When It’s Time For Change” and reads: Once cured – the team may change; Few transition to a survivorship clinic; Even less to a survivorship clinic with Rb experience; Some children are never told of their diagnosis; Children grow up, move, and may live very far from any Rb specialists.

Retinoblastoma Survivorship at One Rb World

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.

An ethnically diverse group of people sit together around a table, moving puzzle pieces. The photo is taken from above, and only the hands of the participants are visible.

Multicentre Research Collaboration: the Challenge and the Light

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 Treatment and Vision – The Double-Edged Sword

When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.

10 different people’s arms reach inwards to clasp hands at the centre. They represent different races, and their sleeves are brightly coloured.

Multicentre Research Collaborations for Retinoblastoma

Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.

A woman sits alone on a bench under a sprawling weeping willow tree in a park. She is facing away from the camera.

Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care

Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.

An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

Global Eyes: Connect, Communicate and Collaborate for Cure

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.

2 people side by side at a wooden table, one working on a laptop the other writing in a notebook. Only their hands are visible.

4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.

Survivor participation in retinoblastoma research is key to understanding long-term impacts of the cancer, and improving care. But many barriers to participation exist Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers, and opportunities to overcome them.

A long roads winds through rough country of valleys and hills.

Retinoblastoma Follow Up Care: the Long and Winding Road

Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life. The end of cancer therapy brings both celebration and uncertainty. Knowing what to expect can help calm worries and empower strong advocates. Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.

A photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

Retinoblastoma Awareness, Screening and Early Detection at One Rb World

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.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.