Doctors, researchers, parents, survivors and children at One Rb World London, October 2012.
Why One Retinoblastoma World?
When diagnosed early and treated effectively, retinoblastoma is highly curable. No child should die, or suffer avoidable blindness, from this eye cancer.
Collaborative research, clinical care and family support to benefit the majority of children and survivors can only be developed through inclusive meetings with a real-world focus.
The One Retinoblastoma World mission is to ensure that every caregiver has access to appropriate knowledge, skills, resources and collaborative opportunity to enable high quality evidence based care for each affected child, survivor and family.
What is One Retinoblastoma World?
One Retinoblastoma World gathers together eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue best possible care for all affected children and survivors. The meeting asks key questions:
How can we ensure all children and survivors have access to high quality care?
What treatments are most effective for retinoblastoma, with least side effects and risks?
What are the psychosocial impacts of retinoblastoma, and how can we improve quality of life?
How can we best collaborate to advance care?
The program focuses discussion on early diagnosis, medical care, family support, global collaboration and resource mobilization, exploring important aspects of retinoblastoma, including:
- Awareness and early detection
- Staging and pathology
- Current management
- Treatment availability and access
- Decision Making Processes
- Palliative care
- Care in low- and middle-income countries
- Technology to enhance care
- Psychosocial care
- Survivorship and lifelong care
Each session combines presentations and round-table discussion. This format helps identify practical solutions to grow effective infrastructure, facilities, resources, knowledge and skills for effective universal care.
The program encourages collaborative effort and networking, focused on understanding the needs of the child, family and survivors, building a solid foundation to support rigorous international multi-centre research. This collaboration will ultimately build greater knowledge and scientific evidence, improving survival, vision outcomes and psychosocial care for all.
Small group discussions at One Rb World 2014 in Toronto, Canada.
Who Runs One Retinoblastoma World?
One Retinoblastoma World is not a program of any specific organization. We are an open community of people who care passionately about improving cure of children with retinoblastoma, and quality of life among survivors and children who cannot be cured. We follow a constellation model of collaborative leadership that supports multi-organization partnerships and inspires innovative thinking and problem solving.
To date, seven One Retinoblastoma World meetings have been convened, hosted by different institutions and organizations. Events since 2017 are detailed on the One Rb World hub:
- London, England (2-3 October 2012), hosted by World Eye Cancer Hope UK.
- Toronto, Canada (26-28 October 2014), hosted by Retinoblastoma Program @ the Hospital for Sick Children (SickKids).
- Dublin, Ireland (17-18 October 2015), hosted by the Retinoblastoma Programs of Ireland and SickKids (Toronto).
- Washington D.C., USA (9-11 October 2017), hosted by World Eye Cancer Hope USA.
- Virtual (3-4 October 2020). Due to the COVID-19 pandemic, this event was held virtually, jointly hosted by the Canadian Retinoblastoma Society, Canadian Retinoblastoma Research Advisory Board (CRRAB), International Rb Consortium, and World Eye Cancer Hope USA.
- Virtual (1-3 October 2021). Due to the ongoing pandemic, travel restrictions and safety concerns, this meeting was again 100% virtual. The event was jointly planned and hosted by World Eye Cancer Hope USA and Dr. Sandra Staffieri, retinoblastoma care co-ordinator at the Royal Children’s Hospital Melbourne, representing Australia’s retinoblastoma community.
- Honolulu, Hawaii (15-17 October 2024). Jointly planned and hosted by World Eye Cancer Hope USA and Dr. Sandra Staffieri, retinoblastoma care co-ordinator at the Royal Children’s Hospital Melbourne, representing Australia’s retinoblastoma community.
One Retinoblastoma World usually takes place immediately before the World Congress of the International Society of Paediatric Oncology. The SIOP Congress is the world’s largest annual paediatric oncology meeting, gathering thousands of medical professionals and parent/survivor advocates from every corner of the globe to share and build knowledge for children with cancer.
SIOP is a highly effective organization, working diligently to improve care for children with cancer and survivors around the world. SIOP’s Paediatric Oncology in Developing Countries Retinoblastoma Group is a powerful force against the deep challenges of childhood eye cancer in resource limited settings. However, many challenges remain in the retinoblastoma world.
This is a perfect opportunity for our global retinoblastoma community to focus on the world and the many thousands of children whose lives and sight we strive to save, and survivors who continue to live with effects of eye cancer, its treatment and cancer risks. Both in resource rich, and resource limited settings.
A concessionary registration fee is available to delegates from low and lower-middle income countries to enable global participation and collaboration.
One Rb World on our Blog
The following articles share highlights from past One Rb World meetings and SIOP World Congress.
- One Rb World 2024: Hawaii Says “ALOHA” to the Global Rb Community (3 part blog)
- One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together
- One Rb World 2020: Inspiring Global Support, Research and Action.
- Reflecting on One Retinoblastoma World 2017
- One Rb World 2017, Washington D.C.
- One Retinoblastoma World, Dublin 2016 – Part 1
- One Retinoblastoma World, Dublin 2016 – Part 2
- SIOP World Congress 2016
- Alfred Knudson Memorial Session – SIOP 2016
Many of the participants at One Rb World 2016 in Dublin, Ireland.
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