Get Involved with CRRAB
If you are a Canadian patient/caregiver:
If you are a researcher:
CRRAB is the Canadian Retinoblastoma Research Advisory Board and we are patients, families, health professionals and researchers from across Canada. Our aim is to have patients work alongside researchers to create retinoblastoma research that is relevant to patients and improves care and quality of life.
Have you been affected by retinoblastoma? Please consider participating in our study to uncover the psychosocial needs of retinoblastoma patients and families!
Retinoblastoma patients, families, health professionals, and researchers from across Canada were invited to answer, “What questions about retinoblastoma would you like to see answered by research?” Over 100 responses were submitted. Responses were then collated and ranked by a Steering Committee comprised of patients, families, health professionals, and researchers to arrive at 30 research questions. An in-person workshop was held in December 2017 to discuss and rank the 30 questions. From this meeting patients, families, health professionals and researchers jointly arrived at the Top 10 Retinoblastoma Research Priorities in Canada.
This will be a reoccurring quarterly event intended to bring the Canadian retinoblastoma community together for an informal discussion on research, similar to a Journal Club, so grab a warm beverage and join us.
Everyone in the retinoblastoma community is invited to attend this free virtual session (including survivors, family members, researchers, and health professionals).
For event information, see our social media or email retinoblastoma.research@sickkids.ca
Read plain language summaries that were used for discussion in past Cup of Tea events.
Currently, there is a breakdown in the translation of research from the lab to bedside and many important voices are missing from the conversation. We want to change retinoblastoma research so that it is relevant to patients and families and, ultimately, to improve care.
Join today to:
Reading scientific articles from reputable journals is a great way to learn more about retinoblastoma and to use your knowledge to have discussions with your retinoblastoma care team. We invite you to visit the new section of our website showcasing plain language retinoblastoma article summaries.
There are many ways for you to be involved! Explore the different options listed to find which fits you the best!
Written by: Ivana Ristevski and Sue Marsh-Woods Vision Loss Rehabilitation Canada (VLRC) is a non-profit, national healthcare organization dedicated to helping people who have low or no vision. They offer a range of services, including training, tools, and resources, to assist individuals in adapting to vision loss and maintaining their independence. Tailored Support for Children