The Canadian Retinoblastoma Society (CRBS)

“We want to ensure that all RB community members have a safe place to ask questions, and the opportunity to feel that connection and acceptance. It is important that families and individuals know that they are not alone,that a retinoblastoma community is here for them.”

The Canadian Retinoblastoma Society (CRBS) is a registered charity located near The Hospital for Sick

Children in Toronto, Ontario.

Our mission at CRBS is to provide education, advocacy and peer support to Canadians touched by

Retinoblastoma (a rare pediatric cancer). Our vision is to offer a safe and supportive community for

everyone touched by RB in Canada. The CRBS strives to educate patients, professionals and family

members on valid information regarding research, treatment options, related organizations, commonly

used terms and more. Peer support is an important part of our community as those with lived RB

experiences can provide valuable knowledge and insight to peers, some of whom are just beginning

their RB journey. We pride ourselves on having volunteers from the RB community contribute on the

board of directors to plan and execute both in person and online events to meet the needs of this

community.

Since the 1980’s, the Canadian Retinoblastoma Society has hosted gatherings across Canada where

retinoblastoma community members can connect and share experiences while having fun. Prior to the

pandemic, the focus was on annual in person events including symposiums, family picnics and

fundraisers. Since then, the CRBS has aimed to increase its Canada-wide reach with more online support

through our website and social media. Some of the topics we’ve covered in our virtual gatherings the

last couple years include: infant massage techniques, psychosocial support during and after treatment, a

caregivers’ discussion, survivor panel, a fun children’s event and more. We love meeting our amazing

community members at these events.

The biggest challenge we see from our community is the feeling of loneliness trying to navigate the

medical system and all the physical and psychosocial challenges that follow. Having a platform and a

network of patients, caregivers, and medical professionals is one of our organizations most valuable

assets. We understand that the RB cancer journey is unique and many questions will come up along the

way. Many adults that contact the CRBS have never spoken with another person who has had

retinoblastoma or wears an artificial eye. There is something really special about connecting with others

that have a similar lived experience and understand your unique circumstances. We want to ensure that

all RB community members have a safe place to ask questions, and the opportunity to feel that

connection and acceptance. It is important that families and individuals know that they are not alone,

that a retinoblastoma community is here for them.

For more information on the Canadian Retinoblastoma Society and the their services, please visit their website.