Author: Ivana Ristevski

We would like to share with you a new resource for retinoblastoma patients, survivors, and families interested in applying their lived experience and skills to influence retinoblastoma research.

The Retinoblastoma Research and You! booklet was developed to encourage patients to join the Canadian Retinoblastoma Research Community (formerly known as the Retinoblastoma Research Registry) and participate in CRRAB.

This booklet was developed over the course of several months by patients, researchers, and health professionals. It outlines how individual patients’ lived experience and skills can influence retinoblastoma research. The booklet highlights real-world examples of patient-partnered research activities at different stages of the research process. This is clearly illustrated through testimonials written by Retinoblastoma Champions, patients who actively promote patient engagement in research and encourage joining the Canadian Retinoblastoma Research Community by drawing from their personal experience.

I invite you to view the Retinoblastoma Research and You! booklet by clicking below.

We encourage you to share the link and relevant CRRAB social media posts with people who would benefit from this booklet.

If you prefer to view a hard copy, one can be mailed to you. Please send a request for a hard copy booklet by emailing us at retinoblastoma.research@sickkids.ca with your name and shipping address.