We work closely with organizations that advocate for, fund and conduct research. This page lists those organizations’ web pages, news feeds, and press releases about innovations and progress in finding cures for blindness.
The Foundation Fighting Blindness– The world’s leading private source for inherited retinal disease research funding. FFB is committed to driving research until the entire spectrum of retinal degenerative diseases is eradicated.
Visit their site for updates, advice, news and inspiration.
The FFB provides My Retina Tracker to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.
To stay on top of research updates and treatments, we recommend the FFB’s blog, Eye on the Cure.
NEW! RPE65 Help needed
Spark Therapeutics and the Snow Companies, a healthcare communications company, are currently seeking people to be on a Patient Advisory Board for people living with an RPE65-mediated inherited retinal disease. They are seeking individuals who are 18 years or older who are diagnosed with, or caring for someone diagnosed with, an RPE65-mediated inherited retinal disease. The participants must live in the United States, be willing and able to travel, and be willing to share their opinions and experiences. If you know anyone who fits these criteria and may be interested, please share this information. To maintain confidentiality and privacy, individuals are asked to self-nominate for this opportunity by contacting the Snow Companies at 1-844-706-5725. This was recently updated to allow for participation by families who can’t travel! Call now to see if it’s a good fit for you.
On May 9, Spark issued a press release about progress with their FDA BLA filing on voretigene neparvovec, a promising new treatment for some forms of LCA.