As a global advocacy organization dedicated to helping those affected by blindness caused by rare inherited retinal disease, Sofia Sees Hope connects families with Leber congenital amaurosis [...]
Ledyard, CT (June 11, 2019) — Laura Manfre of Ledyard, CT, a co-founder of Sofia Sees Hope, has been named a National Trustee by the Foundation Fighting Blindness. Sofia Sees […]
Two people deeply involved in patient advocacy and public policy recently urged members of the rare disease community to use their personal experiences as a means of advocating for research […]
(May 22, 2019) — Sofia Sees Hope received two grants in May from southeastern Connecticut organizations that will be used to help cover travel expenses for families to attend its […]
Long before Grey’s Anatomy captured television audiences, the 1980s medical drama, Quincy, M.E., helped propel passage of Congressional legislation that fostered the development of more drugs for [...]
Nicole Kear faked it for a long time. On a romantic getaway, as her boyfriend gazed at the starlit sky, she gazed at the vast darkness. Same with the twinkling lights […]
“Look like you can see!” Dante Priebe implores to his panicked, visually impaired sister Sofia as she struggles behind the wheel to make a three-point turn in her driveway. “I do […]
Sixth-grader Daniela Delgado told Connecticut lawmakers on Rare Disease Day that she lives with rare disease just like 30 million other people in the United States – and just like […]
Sofia Sees Hope supports The Faster Treatments and Cures for Eye Diseases Act, H.R. 6421. We join Foundation Fighting Blindness (FFB), the Association for Research in Vision and Ophthalmology, [...]
Please join us for an evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with […]