Sep 5, 2019

Landmark study shows burden of inherited retinal diseases is borne primarily by families

This month, the Inherited Retinal Dystrophies Consortium Operating for the Under-Represented for Novel Therapies and Services (IRD COUNTS) released a landmark study highlighting the personal costs of living with an inherited retinal disease.

The study, conducted in the Republic of Ireland and the United Kingdom, shines a light on the personal, national, and global impact of living with an inherited retinal disease. The study concludes that the financial impact of living with an inherited retinal disease falls largely on the individual living with the disease and/or their family.

The study is relevant to us at Fighting Blindness Canada because we’re working on several initiatives aimed at better understanding how eye diseases impact individuals, not only medically but also in their day-to-day lives. Understanding the associated financial costs of living with an eye disease is an important data point that we can use to demonstrate to government the importance of investing in health services and accessible treatments for Canadians.

Our Patient Registry is an important tool in gathering this data, because it informs our ability to communicate with government, industry, and community stakeholders about the need for new treatments in Canada. We encourage people living with inherited retinal diseases to learn more about our Patient Registry here.

We recently launched a new initiative that invites people to share their experience living with a blinding eye disease through disease-specific online surveys. Insights gained from these Vision Care Pathways surveys help us better understand the perspectives of patients with eye diseases, which in turn strengthens our ability to advocate for better treatments and access to them. You can access our eye disease surveys within each eye disease page of our Vision Care Pathways resource, which you can find by clicking here.

The IRD COUNTS study also notes the importance of investing in publicly-funded genetic testing services. By getting your genetic testing done, you can better understand the genetic basis of your inherited retinal disease, and determine whether you’re eligible to participate in clinical trials related to emerging treatments. To learn more about genetic testing in Canada, click here.

To read the press release for the IRD COUNTS study, click here. To read the IRD COUNTS report in its entirety, click here.

To learn more about our Vision Care Pathways surveys, click here.

To sign up for our Patient Registry, click here.