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.
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Word of the week: Nystagmus. Learn more below, and brush up on terms in our glossary: hopeinfocus.org/for-families/rare-retinal-disease-glossary/![]()
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Image Description: Definition of Nystagmus: a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination; they can occur from side to side, up and down, or in a circular pattern on a blue background.
The plight of persons living with a rare disease such as Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs) is a critical unmet need of patients in healthcare. The statistics are concerning; there are 7000 rare diseases in the world that affect 350 million people. ![]()
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Three-quarters of persons living with a rare disease are children and only half of patients receive an accurate diagnosis. ![]()
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There is an urgent need to communicate knowledge and expertise in the field of rare disease detection. Yet covering rare diseases has been a particular challenge for journalists because the word “rare” itself implies that the topic isn’t of particular interest to mass-market news audiences.accurate diagnosis. I'm thrilled that the National Press Foundation is offering an online conference for journalists who wish to cover rare diseases from Oct. 17-19, 2022. The program is free, on the record, and open to journalists from around the world. Applications to attend are due Aug 16. Please share with your journalist friends and colleagues. nationalpress.org/training/apply-covering-rare-diseases-journalist-fellowship-global-reporting-gr...
APPLY – Covering Rare Diseases: Journalism Fellowship & Global Reporting Grants
nationalpress.org
Apply for virtual fellowship on rare diseases, plus $3,000 in reporting grants. Learn from top world experts in rare diseases, diagnostics and more.