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!
In rare disease, self-advocacy is key, but it can also be difficult and intimidating. Join us Wednesday June 16, 7pm ET for our "Let's Chat About ..." webinar w/ Tami Morehouse & Jack McCormick, two amazing examples of the power of self-advocacy.
Register: https://t.co/2Np9a58Z3k
Fun fact: CT doesn’t have a #RareDisease Advisory Council. If you’re lucky to live in one of the 15 states with an RDAC or 12 states creating one, go to this webinar: https://t.co/Qdyorq885S And CT? Do better. @GovNedLamont
Start your holiday weekend on a high note with this inspirational story about Joe Smith, legally blind since birth with LCA8, living his best life as a lawyer, teacher, skier, husband, and more. “Luck is what happens when preparation meets opportunity.”
https://t.co/cUUoMp706Y
Thanks to our amazing sponsors for the 2021 Scavenger Hunt, which starts Friday! Gather your team (in person or remotely) and get ready for a new array of challenges and fun. Help raise awareness for LCA! https://t.co/IAM50EjPrK @spark_tx @AGTC_ @editasmed @MeiraGTx @JanssenUS https://t.co/CsVDFZGCXP
In the world of rare disease, self-advocacy is so important, but it can also be difficult and intimidating. Join us Wednesday June 16, 2021 at 7:00pm ET for our "Let's Chat About ..." webinar as we host Tami Morehouse and Jack McCormick, two amazing examples of the power of self-advocacy.![]()
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Register Now for Let’s Chat About … the importance of self-advocacy![]()
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Sofia Sees Hope | Sofiaseeshope
www.sshwebseries.com
Sofia Sees Hope is proud to bring our web series “Let’s Chat About ...” to the Leber congenital amaurosis and rare inherited retinal disease communities. We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in resea...
Fun fact: CT doesn’t have a Rare Disease Advisory Council. If you’re lucky to live in one of the 15 states with an RDAC or 12 states creating one, go to this webinar: ow.ly/Tqtf50F6FNs