About One Retinoblastoma World
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 campaigns
- Staging and pathology
- Current management
- Availability of treatment
- Decision Making Processes
- Palliative care
- Care in developing countries
- Technology to enhance care
- Psychosocial care
- Lifelong care for survivors
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, six One Retinoblastoma World meetings have been convened, hosted by different institutions and organizations:
- 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.
- Ottawa, Canada (3-4 October 2020). Due to the COVID-19 pandemic, this was a virtual event. hosted jointly by the Canadian Retinoblastoma Society, Canadian Retinoblastoma Research Advisory Board (CRRAB), International Rb Consortium, and World Eye Cancer Hope USA.
- Honolulu, Hawaii (1-3 October 2021). Due to the ongoing pandemic, travel restrictions and safety concerns, the meeting was again 100% virtual. The meeting 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.
Why Combine with the SIOP Congress?
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.
Many of the participants at One Rb World 2016 in Dublin, Ireland.
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