News

Click here to download the newsletter.

Sofia Sees Hope has launched a Family Connections program designed to help end the isolation that many feel when they receive a rare inherited retinal disease diagnosis. The Family Connections [...]

Ledyard, CT (February 6, 2018) — Sofia Sees Hope, an organization dedicated to finding treatments and cures for blindness caused by inherited retinal diseases (IRDs), is helping to ensure that [...]

Sofia Sees Hope launches International Rare Disease Day February campaign — ‘Get Tested, Get Connected’ — to encourage those diagnosed with rare inherited retinal diseases to receive genetic [...]

Click here to download the January 2018 issue of our ‘Seeing Hope’ newsletter.  

LUXTURNA™ (voretigene neparvovec), is the first pharmacologic treatment for inherited retinal disease and the first gene therapy for a genetic disease in the US Ledyard, CT (Dec. 19, 2017) — […]

Ledyard, CT (Dec. 4, 2017) — Sofia Sees Hope, a Ledyard, CT-based patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by Leber congenital [...]

Ledyard, CT (Oct. 25, 2017) — The Oct. 14 ‘Dinner in the Dark’ event hosted by Sofia Sees Hope raised nearly $200,000 to support its advocacy and education programs for […]

Sofia Sees Hope Co-Founder Laura Manfre will help provide the LCA community’s perspective to a Food & Drug Administration panel Thursday about a proposed genetic therapy for Leber congenital [...]

Sofia Sees Hope published Seeing Hope, its first newsletter in October, a keystone of its advocacy and outreach program for families living with Leber congenital amaurosis. “The goal of [...]