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!

2 days ago
We join with dozens of organizations representing the 30M Americans with rare diseases to support the Rare Disease Advancement, Research, and Education Act of 2018 (H.R.5115) “RARE Act of 2018.” #raredisease
2 days ago
It’s @DNAday - and we want to remind you how important it is to #KnowYourGene when you have a rare inherited retinal disease ( #IRD)! Knowing your gene can connect you to important research and to others w/ your disease.
3 days ago
The @US_FDA granted @MeiraGTx Fast Track designation for its experimental #genetherapy AAV-RPGR for treatment of X-linked #retinitispigmentosa due to defects in the retinitis pigmentosa #RPGR gene, an inherited eye disease that causes blindness. #IRD
6 days 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 day ago

Sofia Sees Hope

Today is International Guide Dog Day! We're celebrating the hard work guide dogs put in to give independence to their owners by giving a shout out to the largest Guide Dog school in North America, Guide Dogs for the Blind! Learn more about their mission to serve people who are blind or low vision here:

Image Description: A yellow Lab guide dog is lying down, wearing a guide dog harness.
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