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Desirae Potts breaks into tears when she recalls the first time a doctor said her infant son James had a disease she’d never heard of – Leber congenital amaurosis, known […]

One woman called doctor after doctor, only to hear they would not treat her and her two rare pediatric conditions because she turned 18 and no longer qualified for help. […]

Hope in Focus is pleased to announce our Director of Outreach and Development Courtney Coates will be attending the largest meeting of eye and vision researchers in the world. The […]

The 13-member Connecticut Rare Disease Advisory Council (RDAC) is in the middle of its making, with the announcement of its first six members. The council will give patients, families, [...]

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 […]