FORMERLY KNOWN AS SOFIA SEES HOPE
SEEING 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 as Sofia Sees Hope, Hope in Focus 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 Hope in Focus.
Let’s Get Social!
We had a fantastic conversation last month with Jill Dolgin at AGTC, answering this important question: how does the voice of the patient manifest in helping speed up the process of drug development and bringing treatments to market?![]()
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hopeinfocus.org/lets-chat-about-the-importance-of-the-patient-voice-in-rare-disease/
hopeinfocus.org
We are humbled by the outpouring of support for our rebranding. Thank you so much for the positive feedback. We put together an FAQ to walk through the process, including the most-asked question: What does Sofia think about the name change? ![]()
hopeinfocus.org/our-new-name-faqs/
Our New Name - FAQs - Hope in Focus
hopeinfocus.org
Why did we change our name? It’s simple: we’ve grown and matured. While Sofia represented people living with Leber congenital amaurosis (LCA) and rare inherited retinal diseases (IRDs), we decided...