What We Do

Support For Families

• A Family Support Network. The Network is comprised of screened survivors and parents of a child affected by retinoblastoma, who are willing to share their knowledge and experiences with other families.

• Opportunity to gain insight on research, understand physical and social challenges, obtain a connection to a supportive community. Through e-newsletters, our website (www. rbsociety.ca) as well as our Facebook page (Canadian Retinoblastoma Society), we provide information about the Society’s activities and events, trends in research, as well as links to other informational sites and articles.

• The RB Society plans and organizes Conferences, Meetings, and Social Gatherings including The Retinoblastoma Research Symposium in support of their Family Day activities. These events foster connection with individuals whom have had similar experiences, increase sharing of knowledge and understanding as well as bring professionals together to collaborate on successes across the nation. If you are hosting an event in support of Retinoblastoma families, please contact us, we are happy to hear about and advocate for new initiatives.

Advocacy

The Society believes that all Canadian families, regardless of where they reside, are entitled to access the best care available. The Society looks to advocate and support families’ efforts to access the highest level of care. The Society plays an active role in Canada’s National Retinoblastoma Strategy. The Strategy involves contributions from ophthalmologists, oncologists, social workers, geneticists, parents, patients and other influencers, from across Canada, who desire to achieve the best opportunities for Canadian retinoblastoma patients and their families. One of the primary goals was to develop national standards and clinical guidelines for retinoblastoma to ensure a common standard of care is available to all Canadians affected by the disease. These guidelines were achieved in 2009 and can be obtained by contacting the Society.

Information

The Society is committed to increasing awareness of RB and the long-term health implications among the affected families, the medical profession and the general population. Early detection is key to saving vision and lives; only through increased awareness can this be possible.

As a means of educating families whom are or have experienced RB, the Society provides:

• A wealth of resources for parents, kids and other family members, as well as a glossary of commonly used terms to help you better understand the information your medical professionals are providing.

• The RB Society promotes new research initiatives which may be of benefit to our members. We accept charitable donations and in turn make grants to Canadian eye cancer researchers working in the area of retinoblastoma. We endorse The Canadian Retinoblastoma Patient Engagement Strategy led by the Canadian Retinoblastoma Research Advisory Board (est. 2016) as it strives to create meaningful, co-directed retinoblastoma research which is relevant to those affected and improves outcomes.