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Jessi Crawford fancied the clarinet when she played in her middle school band, while classmate Ted Beaman favored the trombone and guitar. Never did they dream their love of music […]

Representatives from Hope in Focus joined Connecticut’s Rare Disease Day celebration at the Capitol in Hartford on March 23, 2023. A New England snowstorm postponed the event usually [...]

The community of people living with Leber congenital amaurosis caused by mutations in the RDH12 gene moved closer to realizing the shared goal of establishing a clinical trial to find […]

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 [...]