May 2023 - Hope in Focus

Posted May 19, 2023

From Uncertainty to Understanding for Family of 4-year-old Living with LCA1 GUCY2D

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 […]

Hope in Focus to Host Screening of A Shot in the Dark and Talkback with Blind Athlete Anthony Ferraro

Hope in Focus will host a fundraising event called A Rare Opportunity on June 4, 2023, at United Theatre in Westerly. Included will be a viewing of the award-winning film […]

Connecticut Residents Living with Rare Diseases Voice Concerns to State Lawmakers

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. […]