Usher 1F Collaborative

📢 The Foundation Fighting Blindness is bringing the voices of the Usher syndrome community directly to the FDA!

In spring 2027, we'll host a Patient-Focused Drug Development (PFDD) meeting focused on Usher syndrome—an opportunity for our community to help shape the future of treatments and ensure patient perspectives remain at the center of progress.
Through patient stories, discussions, and feedback, we'll help create a Voice of the Patient report that will be hosted on the FDA website, helping inform future therapy development, influence regulatory review, and strengthen advocacy efforts for the Usher syndrome community.

We are grateful to AAVantgarde Bio, Atsena Therapeutics, Eli Lily, The Fairfield Fund, and Sepul by Théa for their generous support of this important initiative.

Stay tuned for more details on the meeting!

Image Description: Dark blue background with the Foundation Fighting Blindness and “Spotlight on Usher syndrome” logos in the top left corner. Text below reads, The Foundation Fighting Blindness is bringing the voices of the Usher syndrome community directly to the FDA!" More text below reads, "Thank you to our partners." AAVantgarde, Atsena, Eli Lily, The Fairfield Fund and Sepul by Théa logos below.

Genome-wide screen yields new gene therapies to protect against retinal degeneration Researchers in the WashU Medicine Department of Ophthalmology & Visual Sciences have discovered key neuroprotective genes that could lead to the development of gene therapies to treat retinitis pigmentosa, an inherited form of retinal degeneration that causes blindness. The findings, published in Ne...