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.

 
Editas
Mystic Aquarium
Spark
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital
Dominion
MeiraGTx
Sanofi Genzyme
 

Let’s Get Social!


Interview opp for parents of children w/ Retinitis Pigmentosa or Leber congenital amaurosis to review materials currently in development. If you are interested in learning more, please contact Pillar Patient Advocates at 908-509-8900, or email Epilkington @Pillaradvocates.com

Some updates in these uncertain times ... https://t.co/bZCVhrIVUC

Some updates in these uncertain times ... - https://t.co/bZCVhrIVUC

1 week ago

Sofia Sees Hope

We have learned of an interview opportunity for parents of children with Retinitis Pigmentosa or Leber congenital amaurosis to review materials that are currently in development.

The interviews are 60 minutes via phone/computer and participants are compensated $125 for their time and input. All information discussed is kept strictly confidential. If you are interested in learning more, please contact Pillar Patient Advocates at 908-509-8900, or via email Epilkington@Pillaradvocates.com
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