Sofia Sees Hope Rebrands with an Eye to the Future
Sofia Sees Hope this month unveiled a new name and logo — Hope in Focus — as the organization sets its course for the next decade of work to benefit […]
Let’s Chat About … the Importance of the Patient Voice in Rare Disease
We hear a lot these days about the necessity of the patient voice in developing treatments, especially for people living with rare disease, such as Leber congenital amaurosis (LCA) or […]
Let’s Chat About … CRISPR and gene editing technology
Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with […]
Let’s Chat About … the Importance of Self-Advocacy
Living with vision loss, Tami Morehouse and Jack McCormick learned the challenging complexities of advocating for themselves so well, that they both now earn a living helping the general [...]
Let’s Chat About … the importance of the patient voice in rare disease
Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with […]
Let’s Chat About … Patient Registries and My Retina Tracker
Join the My Retina Tracker® registry and you’ll be contributing to science by driving research to help improve your quality of life and to find treatments and cures for Leber […]
Navigating Life with CRB1
Joseph F. Smith has been legally blind since birth. He lost what little sight he had in his mid-30s, when he learned he had Leber congenital amaurosis (LCA). Thirty years […]
Encouraging News for CRB1 Gene Therapy Treatments
Early research into a form of Leber congenital amaurosis (LCA) caused by mutations in the CRB1 gene – including the discovery of a new version of a protein expressed by […]
Let’s Chat About … Why Natural History and Patient Outcome Studies Matter
Amid the intricacies of researching treatments and cures for rare diseases, such as Leber congenital amaurosis (LCA) and other inherited retinal diseases (IRDs), the patient remains the major [...]
Sofia Sees Hope Scavenger Hunt
Welcome to the Sofia Sees Hope Scavenger Hunt! We are glad to meet you. We are doing this to continue to raise awareness for rare inherited retinal disease and Leber […]