Supporting the LCA and rare retinal disease community
We see a cure for blindness.
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.
Let’s Get Social!
Often with rare disease it can feel discouraging bk it seems like there is no progress. Thanks to @benyerxa of @fightblindness for his presentation at our LCA Family Conference. He showed how far research has come, and how rapidly it is moving forward.
We were thrilled to welcome Dr. Katherine High from @spark_tx at our LCA Family Conference. Understanding the history behind gene therapy research is critical to the future of treatments and cures for #LCA and other rare inherited retinal diseases. #IRD