Supporting the LCA and rare retinal disease community

We see a cure for blindness.

What is LSA?

What is Leber Congenital Amaurosis (LCA)?

LCA is a rare inherited retinal disease characterized by severe vision loss at birth. While some children are born with little or no vision, others may have significant vision loss in the first few years of life, stable vision for a period of time, and then eventually complete vision loss as the retina deteriorates into total blindness.

What We Do

Founded in 2014, Sofia Sees Hope is a nonprofit 501(c)3 patient advocacy organization dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and rare inherited retinal disease community.

Thank You to These Organizations

for their Ongoing Commitment to Sofia Sees Hope.

Mystic Aquarium
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital

Let’s Get Social!

13 hours ago
Wednesday marked a milestone after Creed’s surgery, reaching what doctors call the 30-day peak, meaning 30 days after surgery on Creed’s right eye, his vision will have improved as much as it is going to from the treatment. #Luxturna SofiaSeesHope photo
1 week ago
New Patient Services Program Helps People Navigate Their Road To A Cure. #LCA #IRD @spark_tx @fightblindness #RPE65 #KnowYourGene #GetTestedGetConnected
1 week ago
The @RareDiseases invites all advocates to attend and participate in the Rare Action Network Advocacy Workshop on April 23 in Hartford, Connecticut 8am-3pm. #IRD #RareDisease
1 week ago
From @AGTC_ : “There are currently no @US_FDA approved treatments for #XLRS, a leading cause of macular degeneration in young men.” Read about the clinical trial here: