Uniting global voices to drive collaborative care, research, and lifelong support.
The best care for children with retinoblastoma, survivors, and their families doesn’t happen in isolation. It evolves when the people who care deeply come together to share knowledge, spark ideas, and build practical solutions for real-world challenges.
The One Retinoblastoma World Conference unites eye and cancer specialists, researchers, families, survivors, advocates, and decision-makers from around the globe. Together, we work to advance life- and sight-saving care, strengthen community support, and grow collaborative research rooted in lived experience.
The Challenge
Retinoblastoma care is complex, lifelong, and deeply influenced by many factors beyond medicine. Yet the vital perspectives of families and survivors are often absent from mainstream clinical meetings.
At most conferences, key topics such as early diagnosis, psychosocial support, patient-led research, and survivor care receive limited attention. Families and survivors navigating this cancer often feel unheard, while clinicians and researchers lack opportunities to learn from their real-world experiences.
Care practices and outcomes also vary significantly worldwide. Differences in training, infrastructure, and access to treatment add to inconsistent care. In Low- and Middle-Income Countries, limited resources magnify these gaps and often lead to preventable blindness and death.
Meanwhile, many researchers and clinicians lack the tools, time, or platforms to collaborate across borders and with the family and survivor community. They miss valuable opportunities to work together on the urgent, shared challenges we face.
Our Solution
We created the One Retinoblastoma World conference to address these critical gaps. This unique three-day event unites the entire global retinoblastoma community – families, survivors, clinicians, researchers, and advocates – in one inclusive, action-focused meeting.
The first conference took place in London in 2012, immediately before the International Society of Paediatric Oncology (SIOP) World Congress. This model ensures that retinoblastoma care is part of the broader childhood cancer conversation – and makes it easier for oncology professionals to attend.
The program combines:
- Expert presentations on diagnosis, medical care, survivorship, support, and emerging research.
- Interactive panel discussions and small-group collaboration.
- Sessions led by clinicians, researchers, parents, and survivors.
- Dedicated time to explore lived experience, trauma, healing, and hope.
- A vibrant child life program, led by Certified Child Life Specialists, for children attending with their families.
Topics include:
- All aspects medical, psychosocial, and lifelong care.
- Experiences of retinoblastoma around the world.
- Global collaboration.
- Family-centred support.
- Collaborative, patient-led, and ethnographic
One Rb World honours the perspectives and priorities of all who are affected by retinoblastoma, around the globe and throughout life.
The conference is not owned by any organization. It is an open, evolving community of passionate people committed to improving care, cure, and quality of life for all affected—throughout life.
Impact of One Rb World
Since 2012, seven One Rb World conferences have taken place, hosted by different organizations and communities:
- 2014: Toronto, Canada – hosted by Retinoblastoma Program @ the Hospital for Sick Children (SickKids), and Daisy’s Eye Cancer Fund Canada.
- 2016: Dublin, Ireland – hosted by the Retinoblastoma Programs of Ireland and SickKids (Toronto).
- 2017: Washington D.C., USA – hosted by WE C Hope USA.
- 2020: Virtual – jointly hosted by the Canadian Rb Society, Canadian Rb Research Advisory Board (CRRAB), International Rb Consortium, and WE C Hope USA/Canada.
- 2021: Virtual – jointly hosted by WE C Hope USA and Dr. Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital Melbourne, Australia, representing Oceania’s Rb community.
- 2024: Honolulu, Hawaii, USA – jointly hosted by WE C Hope USA and Dr. Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital Melbourne, Australia, representing Oceania’s Rb community.
Each meeting has strengthened global bonds and sparked new initiatives in care, research, and advocacy.
Since 2017, we have livestreamed and recorded most sessions, expanding access to knowledge and connection worldwide. You can view them at our One Rb World Sessions Hub.
One Rb World:
- Raises the profile of retinoblastoma within the global childhood cancer community.
- Fosters long-term partnerships between medical professionals, researchers, families, and survivors.
- Encourages international, multi-centre studies rooted in shared priorities.
- Nurtures deeper understanding of cultural, psychosocial, and systemic challenges in care – and ways to overcome them.
- Inspires new models of inclusive, family- and survivor-centred research, treatment, and support.
The Child life programs helps young attendees understand their experiences, feel seen, heard, and empowered; and connect with peers.
The Next One Rb World Conference
The next One Retinoblastoma World conferences will be held in:
- 2026: San Antonio, Texas (September 12-14, 2026).
- 2027: Sydney, Australia (September 2027).
Both will be held before the SIOP World Congress.
Together, we save lives, create safe sight-saving opportunities, reduce suffering, and enhance wellbeing.
Please join us at the next One Rb World conference to connect with others and share life-changing hope with children, survivors, families, and all who care for them.
One community, one vision, One Retinoblastoma World.
