The Role of the Patient Voice in Rare Disease Advocacy
It’s you. It’s all about you. The journey from identifying a rare disease, to conducting studies, to approving a treatment, is long – but it always starts with the patient, […]
Parent Support On Line 1
In the sometimes-isolating world of rare inherited retinal diseases (IRDs) such as Leber congenital amaurosis (LCA), another option exists to help bring people together – support by telephone. [...]
College Connection: Making A Successful Transition To College
By Jack McCormick Starting high school or going off to college is not easy; new people, classes and sometimes even a new city makes for a stressful transition. Doing it […]
Sofia Sees Hope Lauds FDA Approval of LUXTURNA™
LUXTURNA™ (voretigene neparvovec), is the first pharmacologic treatment for inherited retinal disease and the first gene therapy for a genetic disease in the US Ledyard, CT (Dec. 19, 2017) — […]
College Connection: Three Things Parents Can Do For Their Visually Impaired Child
By Jack McCormick Parents want nothing but the best for their children. This is why I am so often asked questions like, “I have a 6-year-old son who has a […]
4th ‘Dinner in the Dark’ Raises $200K for Inherited Retinal Disease Research
Ledyard, CT (Oct. 25, 2017) — The Oct. 14 ‘Dinner in the Dark’ event hosted by Sofia Sees Hope raised nearly $200,000 to support its advocacy and education programs for […]
SSH To Present at FDA Hearing Thursday on RPE65 Genetic Therapy Drug
Sofia Sees Hope Co-Founder Laura Manfre will help provide the LCA community’s perspective to a Food & Drug Administration panel Thursday about a proposed genetic therapy for Leber congenital [...]
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Through the Eyes of Love: Just James!
Caitlin and Greg Smith eagerly looked forward to the birth of their fourth child, who would complete their busy family of two girls and a boy. Caitlin’s pregnancy was unremarkable, […]