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 is LSA?

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.

 
ProQR
Mystic Aquarium
Spark
Simply Majestic
Mohegan Sun
LM Hospital
Dominion
agtc
MeiraGTx
Janssen
 

Let’s Get Social!


We planned an annual report as a general update on where Sofia Sees Hope is positioned in the realm of inherited retinal disease research & advocacy. It became what we like to call our "yearbook" - from how we started to we are looking to do in the future. https://t.co/G4BwpfA5BK https://t.co/X1nE76eR9d SofiaSeesHope photo

We welcome Jill Dolgin to our "Let's Chat About ...” Sept. webinar! Jill is responsible for incorporating the voice of the patient throughout drug development and in the corporate culture @AGTC_ https://t.co/LO21Yupvl0

It's an honor to be included in this story about NPOs' beginnings. Thank you @fightblindness for working with small groups such as ours, @rphope_org and @savesightnow to move research and advocacy forward for inherited retinal disease. https://t.co/bUlQ4Ns44l

We’re thrilled to see @nytimes @dealbook highlighting the importance of passing #BioBonds legislation to fund critical #biomedical #research for treatments and cures across a wide spectrum of diseases.
https://t.co/QRs8Q11beT