Author: Roxanne Noronha

The Retinoblastoma Research Symposium hosted by the Canadian Retinoblastoma Research Advisory Board (CRRAB) brings together retinoblastoma patients, survivors, families, healthcare professionals, and researchers to drive meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes. 

CRRAB was founded in response to the need for inclusive, high-quality, and translatable retinoblastoma research and embodies the Canadian Retinoblastoma Patient Engagement Strategy to: 

• Share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.); 
• Include a large diverse group of people affected by retinoblastoma in research; and 
• Promote research that is created and led by people affected by retinoblastoma. 

Following its creation, the first CRRAB Annual General Meeting was held in December 2016. This meeting gathered stakeholders of the retinoblastoma research community to develop CRRAB’s purpose, goals, and governance structure.  

While engaging with the Canadian retinoblastoma community in the following year, we encountered an unmet need experienced by many families affected by retinoblastoma: connection to others in the community. In order to meet this, CRRAB hosted a Retinoblastoma Research Symposium in December 2017 to occur alongside the second CRRAB Annual General Meeting. The weekend-long Symposium also included a Family Gathering to provide an avenue for families to meet each other and meet clinicians and researchers; a Marketplace to showcase the services and programs available to those affected by retinoblastoma; a research workshop to build skills and make progress towards developing co-directed research studies; and a Child Life directed children’s program that allowed even the littlest community members a chance to connect.  

The success of the 2017 Retinoblastoma Research Symposium encouraged CRRAB to continue to hold the event. The 2019 and 2020 Symposiums drew greater attendance and connected a larger Canadian retinoblastoma research community.  

First CRRAB Annual General Meeting, December 3, 2016 

2017 Retinoblastoma Research Symposium, December 9 & 10, 2017 

2019 Retinoblastoma Research Symposium, January 26 & 27, 2019 

2020 Retinoblastoma Research Symposium, January 25 & 26, 2020