LCA Families Finding Strength with Each Other
Heather Le’s anxiety accompanying her daughter’s diagnosis of Leber congenital amaurosis melted into relief when she connected with a mom whose daughter was also born with LCA. And this mom – [...]
Diagnosis to Treatment: Pioneering LCA Patient Eases the Journey
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 [...]
Sofia Sees Hope Co-founder Named Foundation Fighting Blindness National Trustee
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 Hope is a 501(c)(3) [...]
The Patient Voice: A Critical Piece of the Rare Disease Advocacy Puzzle
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 and [...]