Events

Please join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event on Rare Disease Day to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Connecticut.

Join Sofia Sees Hope at VISIONS 2020, the national conference of the Foundation Fighting Blindness, a one-of-a-kind event in which individuals who are visually impaired, and their families, have the opportunity to hear about exciting advancements in blindness research. All attendees can gain practical skills for thriving with vision loss, learn about products and services that […]

Welcome to the inaugural Sofia Sees Hope Book Club! This club is especially made for middle school-age kids who are visually impaired. It will be moderated by Sofia Priebe, a high school senior in Connecticut who has vision loss due to Leber congenital amaurosis (LCA). The Book Club will meet weekly on Zoom beginning Monday, […]

We invite you to attend the research update for IQCB1/NPHP5-associated retinal disease (also known LCA 17). Speakers are Amy Laster, Phd, Foundation Fighting Blindness; Todd Durham, PhD, Foundation Fighting Blindness, and Laura Manfre, co-founder and president of Sofia Sees Hope. Our speakers will 1) share an overview of the Scientific Advancement Workshop that took place […]

We invite you to attend the research update for CRB1-associated retinal disease (also known as LCA 8). Speakers are Amy Laster, Phd, Foundation Fighting Blindness; Todd Durham, PhD, Foundation Fighting Blindness, and Laura Manfre, co-founder and president of Sofia Sees Hope. Our speakers will 1) share an overview of the Scientific Advancement Workshop that took […]