Supporting the LCA Community
We see a cure for blindness
Living with LCA
Since 2014, we’ve supported the LCA community with education, resources, and connections that strengthen and unite individuals and families across the IRD community.
Get Involved
Our donors and corporate partners drive our mission, helping us impact lives of those with LCA and rare IRDs. Learn about events, sponsorships, and partnerships.
Finding a Cure
By supporting the ecosystem that develops treatments for blinding diseases, we can advance therapies to approval. Join us in making these breakthroughs possible.
Learn Through Stories & Videos
What’s New
Episode 8 – Odylia Therapeutics: Moving LCA6 Research Forward
Dr. Ashley Winslow is the CEO and Chief Scientific Officer of Odylia Therapeutics, a nonprofit biotech organization accelerating gene therapies for rare diseases, including Leber congenital amaurosis (LCA). Under her leadership, Odylia is advancing a gene therapy program for LCA6 caused by mutations in the RPGRIP1 gene. In this episode, Ashley shares how she entered […]
Let’s Chat About … the Importance of the Patient Voice in Rare Disease
We hear a lot these days about the necessity of the patient voice in developing treatments, especially for people living with rare disease, such as Leber congenital amaurosis (LCA) or other rare inherited retinal diseases (IRDs). So, how does the voice of the patient manifest in helping speed up the process of drug development and bringing treatments to market? […]
Walk to Fight Rare Diseases
April 25, 2026 • Quinnipiac University campus in Hamden, CT. Join us for the Denise D’Ascenzo Foundation Walk to Fight Rare Diseases at the beautiful Quinnipiac University campus in Hamden, CT. The event honors the life of Denise D’Ascenzo and brings our community together in strong support of research and care for rare disorders. Make […]
Did You Know?
genetic mutations can cause LCA
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