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!
Scavenger Hunt 2021 launches in 7 days! Thank you to sponsors @MeiraGTx @spark_tx @JanssenUS @AGTC_ !! In addition to their support they've got very competitive teams entered! Sign up now so you don't have FOMO! https://t.co/IAM50EjPrK
Our collaboration with @fightblindness to bring info to LCA communities continued this spring with a workshop that brought together many of those involved in scientific and research work on the CRB1 gene.
https://t.co/NwTLdHHcRw
Join us 5.13 as we talk all things patient registry with Todd Durham of @fightblindness. What is a patient registry, and why does it matter to the rare disease community? Free. Sponsored by @AGTC_ @DominionEnergy @JanssenUS @MeiraGTx @ProQR and @spark_tx https://t.co/2Np9a58Z3k
Scavenger Hunt 2021 launches in 7 days! Thank you to sponsors @MeiraGTx @spark_tx @JanssenUS @AGTC_ !! In addition to their support they've got very competitive teams entered! Sign up now so you don't have FOMO! sofiasees.org/event/scavenger-hunt-2021/
Scavenger Hunt 2021 - Sofia Sees Hope
sofiasees.org
Your contribution will benefit Sofia Sees Hope, and the education, outreach and advocacy work we are engaged in.
Our collaboration with Foundation Fighting Blindness to bring information to LCA communities continued this spring with a workshop that brought together many of those involved in scientific and research work on the CRB1 gene. We are pleased to say that the news is encouraging, and the workshop advanced some important ideas. ![]()
ow.ly/zpNQ50EL7WI
Encouraging News for CRB1 Gene Therapy Treatments - Sofia Sees Hope
ow.ly
Early research into LCA caused by CRB1 gene mutation shows encouraging possibilities toward developing gene therapy treatment.