Sofia Sees Hope Launches Web Series To Educate, Connect Rare Retinal Disease Community

 In News

Sofia Sees Hope, a nonprofit patient advocacy organization dedicated to working with those affected by blindness caused by rare inherited retinal disease (IRD), is launching a monthly web series that will focus on topics important to the IRD community.

Called “Let’s Chat About …” the series will explore multiple topics of interest to those with Leber congenital amaurosis and other inherited retinal diseases. The series is free and open to anyone, as we look ahead to a common goal of advancing treatments for rare retinal disease. 

First in the series is Ben Shaberman, Senior Director, Scientific Outreach & Community Engagement at the Foundation Fighting Blindness. Ben brings 16 years of experience in reporting on retinal research for the Foundation, and will be providing updates on current treatment research. His webinar is 1 p.m., ET, Wednesday, January 27.

In February, the guest will be Wiley A. Chambers, MD, Supervisory Medical Officer for the Office of New Drugs, Center for Drug Evaluation and Research at the U.S. Food and Drug Administration (FDA). Chambers has supervisory responsibility for the clinical review of ophthalmologic drug products and ophthalmic therapeutic biologic products submitted to the Center for Drug Evaluation and Research. He will be discussing what it takes to receive approval for a new treatment for rare disease. His webinar is 3 p.m., ET Tuesday, February 16.

In March, Emily Place, Licensed Genetic Counselor and Research Study Coordinator at Mass Eye and Ear, will discuss the ins and outs of genetic testing. Place provides risk assessment and genetic counseling services to families with inherited retinal dystrophies. She also serves as the study coordinator for the research study of molecular genetics of inherited retinal dystrophies. She has been involved with Sofia Sees Hope since its founding. Her webinar is 1 p.m.,ET, Monday, March 15.

More information and registration is available here.

About Sofia Sees Hope 

Sofia Sees Hope was founded in 2014 by Elisse Rosen, Laura Manfre and Charles Priebe. Manfre and Priebe’s daughter Sofia has Leber congenital amaurosis (LCA). This rare genetic retinal condition is characterized by severe vision loss at birth and leads to total blindness.

The mission of Sofia Sees Hope is to transform the lives of those affected by blindness caused by rare inherited eye disease. The nonprofit organization generates awareness, raises funds for research, and provides outreach, support and education to those affected by LCA and other rare retinal diseases.