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!
Tami Morehouse is a wonderful asset to the LCA patient advocacy movement since she underwent treatment during the RPE65 clinical trials. Read: https://t.co/SfjE2awIRM Tami will be at our LCA Family Conference July 27. Learn more about it here: https://t.co/8QARHi53Po
Don't miss our LCA Family Conference July 26-28 in Philly: Genetic Superstars Up Close & Personal - https://t.co/wS2k9Lv03J
We’re excited to share this from Spark. We can’t stress enough the importance of a genetic diagnosis. Our upcoming LCA Family Conference in July will provide important updates on research/treatments tied to specific genes: https://t.co/lrvsG20yGM https://t.co/VL4sxaC1hf
LCA Family Conference (7/26-28, Philadelphia) panels: "Your Voice Matters!” "One Disease, Many Approaches” "All About Clinical Trials” "Living with an IRD”. Updates on research& treatments. It’s can’t miss! https://t.co/lrvsG20yGM
Tami Morehouse has been a wonderful asset to the LCA patient advocacy movement since she underwent treatment during the RPE65 clinical trials. She is also an amazing friend.
Tami will be at our LCA Family Conference July 27 in Philadelphia. Please learn more about it here: bit.ly/SSHLCA2019
Diagnosis to Treatment: Pioneering LCA Patient Eases the Journey - Sofia Sees Hope
As a global advocacy organization dedicated to helping those affected by blindness caused by rare inherited retinal disease, Sofia Sees Hope connects families with Leber congenital amaurosis (LCA) and other IRDs through its Family Connections program and through events such as its second LCA Family....Don't Miss Our LCA Family Conference July 26-28 in Philly: Genetic Superstars Up Close & Personal - mailchi.mp/1dda3478b868/its-been-a-year-of-amazing-stories-2454441
LCA Family Conference July 26-28: Genetic Superstars Up Close & Personal
On the left, Dr. Katherine High. On the right, Dr. Jean Bennett. Together, they are the 2018 co-winners of the Sanford Lorraine Cross Award. And they are both speaking at our LCA Family Conference, July 26-28, in Philadelphia.