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 – [...]
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 Hope is a 501(c)(3) [...]
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 [...]