The Foundation Fighting Blindness (FFB) is hosting a free online event this month for eye care professionals (ECPs), low vision students, and faculty to learn about “creating a path forward” for newly diagnosed patients with inherited retinal diseases (IRDs).
First FFB.
As the leading private funder of retinal disease research in the world, FFB is responsible for the identification of over 270 genes linked to retinal disease—plus the launch of 40+ clinical trials for potential treatments.
On the IRD front: Earlier this year, the organization kicked off the “Envisioning Path to Hope” initiative—complete with an IRD best practices webinar—that focused on expanding ECP connections across the country and raising awareness of IRD resources for patients.
- Plus: Just this year, FFB has actively sought IRD-based partnerships, granted IRD program funding, and launched clinical research.
Let’s get into this new webinar.
Titled Providing a Path Forward for Patients with Inherited Retinal Disease, the online course will feature a case study approach for highlighting the IRD patient journey and clinician’s role in providing guidance for a newly diagnosed patient.
Topics of discussion include:
- Delivering a clinical diagnosis of IRD
- Reviewing the low vision rehabilitation process
- Understanding why genetic testing is a critical element in IRD patient care
- Referring patients to resources for maintaining an independent and healthy lifestyle
- Learning of clinical trials for emerging IRD therapies
Will specific IRDs be covered?
Indeed they will, including:
- Retinitis pigmentosa (RP)
- Usher syndrome
- Stargardt disease
- Leber congenital amaurosis
And who are the presenters?
Three experienced leaders in the IRD community:
- Erin Kenny, OD, FAAO, Diplomate AAO (LV)
- Chief of the William Feinbloom Vision Rehabilitation Center, Assistant Professor at Salus at Drexel University in Elkins Park, Pennsylvania.
- Clinical specialty: Low vision rehabilitation
- Michaelle Glaze
- Director of Professional Outreach for FFB
- IRD experience: Routinely participates in FFB webinars, training sessions, interviews, videos, and podcasts to raise awareness of FFB, genetic testing, and clinical research
- RP patient (listen to her story)
- Ben Shaberman
- Vice President, Science Communications for FB; Host of Eye on the Cure podcast series
- IRD experience: Reports on latest IRD research advancements for FFB as well as the latest news on emerging therapies at local/national events
So when is this taking place?
Wednesday, Oct. 23, 2024, from 7 to 8 pm EST.
And how do I register?
Lastly, any other updates from FFB I should know about?
Actually … just last week FFB kicked off its third annual #ShareYourVision social media campaign, which will take place in conjunction with Blindness Awareness Month throughout October.
About the campaign: Individuals are invited to share their personal vision loss stories on social media (using the campaign hashtag and tagging FFB) through written word, audio, or video.
- See here for more details
The purpose: To celebrate “the unique and diverse ways in which individuals experience vision loss,” according to FFB.