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Advocates for people living with rare diseases are collaborating with Connecticut Gov. Ned Lamont’s office and leaders of the Connecticut General Assembly’s Public Health Committee to build the [...]

Data from Editas Medicine’s clinical trial on gene-editing therapy showed meaningful outcomes and improvements to treat a form of Leber congenital amaurosis (LCA). The improvements, though, were [...]

Our 7th Annual Dinner in the Dark came off as an exciting evening of hope and fun, and an opportunity to foster and connect with the mission of Hope in […]

DJ and Brendan Broadbin came to our Hope in Focus LCA Family Conference with a lot of questions about their little boy’s blindness, and they left with amazing answers leading […]

Three people who received diagnoses of Leber congenital amaurosis (LCA) in recent years – but lived most of their lives thinking they had retinitis pigmentosa (RP) – gave us the […]

Please respond by Aug. 31, 2022 We’ve received 30 percent more responses in July to our Hope in Focus Leber Congenital Amaurosis (LCA) Community Survey, and we’re hoping to reach […]

Connecticut Gov. Ned Lamont signed into law years-in-the-making legislation establishing a permanent Rare Disease Advisory Council (RDAC), effective July 1, 2022. Lesley Bennett, Volunteer [...]

Responses Needed By July 29, 2022 Telling your story helps bring the Leber congenital amaurosis (LCA) community together. It also helps rare retinal disease advocates like us at Hope in […]

We’ve heard a lot about therapies to correct mutations in specific genes causing blindness or low vision, and now research is moving beyond single-gene correction to gene-independent therapies to [...]

Innovative funding initiatives created by the Foundation Fighting Blindness are accelerating research advances to find treatments for Leber congenital amaurosis (LCA) and other rare inherited [...]