Inherited Retinal Disease Awareness Month
FBC has helped make September, Inherited Retinal Disease (IRD) Awareness Month! Over 20,000 Canadians have an IRD and for most, there are no treatments available. Starting in 2022, join us to raise awareness of genetic eye diseases that lead to vision loss or blindness.
Help Spread the word
To spread the word about IRD Awareness Month, download our social media toolkit and help raise awareness by using #FBCIRDMonth.
Toolkit instructions: Download the zip file, unzip the toolkit folder to a selected area on your computer, open the unzipped folder and select the social media image(s) you would like to use from the ones provided, and post the image on your social media feed or story using #FBCIRDMonth.
How to Participate in ird mONTH
- Join us live on FBC’s Facebook page Friday, September 23 at 12:30 p.m. EDT for a special Q&A with vision health and IRD expert Dr. Rob Koenekoop. Follow us on Facebook.
- Reserve your virtual seat for FBC’s View Point webinar ‘Gene Agnostic Therapies’ taking place on Thursday, September 22 at 3 p.m. EDT. Register for the webinar now!
- Join us in person at View Point Toronto! Access event and ticket information.
- Living with an IRD? Join FBC’s Patient Registry.
lEARN mORE aBOUT irdS
- Watch our latest Q&A with genetic counsellor, Leslie Colvin James.
- Check out our genetic testing webpage for information on how and why to get tested for an IRD.
- Access recordings of past FBC View Point webinars about IRDs.
What is an ird?
An inherited retinal disease (IRD) is a condition caused by a specific genetic mutation or combination of genetic mutations that lead to vision loss or blindness.

Although there are differences between IRDs, they share some similarities including the following:
- IRDs are inherited, meaning a person is born with a specific genetic mutation that may cause vision loss or blindness at birth or later in life.
- Retinal damage is caused by specific genetic mutations that affect how retinal cells work and survive. Researchers have found over 300 genes that cause IRDs.
- Vision loss ultimately results from damage to the retina in the back of the eye.
There are over 20 IRDs including, retinitis pigmentosa, Stargardt disease, Usher syndrome, Leber congenital amaurosis, Leber hereditary optic neuropathy, choroideremia, cone-rod dystrophy, X-linked retinoschisis, Bardet-Biedl syndrome, adult refsum disease, Axenfeld-Rieger syndrome, Best disease (vitelliform macular dystrophy), and optic nerve hypoplasia.
Do you or a loved one live with an IRD and have a question? Join us Live on Facebook September 23, 2022, or contact our Health Information Line at healthinfo@fightingblindness.ca or 1.888.626.2995.
Inherited Retinal Disease (IRD) Awareness month is a Canadian-recognized promotional health month. For more information visit canada.ca/en/calendar-health-promotion-days
Join the Fight!
Learn how your support is helping to bring a future without blindness into focus! Be the first to learn about the latest breakthroughs in vision research and events in your community by subscribing to our e-newsletter that lands in inboxes the beginning of each month.