Sofia Sees Hope Launches Family Connections Program

Sofia Sees Hope has launched a Family Connections program designed to help end the isolation that many feel when they receive a rare inherited retinal disease diagnosis. The Family Connections program makes it easy for those with Leber congenital amaurosis (LCA) or another rare inherited retinal disease (IRD) to connect with another family or individual by phone or email. Being diagnosed (or having a family member diagnosed) with a disease classified as “rare” can be isolating and lonely. It makes you feel like there is no one else in your situation. This program is designed to alleviate those feelings.

Simply visit https://hopeinfocus.org/resources/connect/ on our website and fill out the brief form on the page. Our Family Connections coordinator will reach out by phone to confirm your information and anything else you want to share. Then we’ll provide you with the phone and/or email contact information for another LCA or IRD individual, family member or caregiver, and let you take it from there!

Please know that we take our privacy policy seriously. We make contact by phone with all of our families first, and we will only share your information with another LCA or IRD family or individual who has also given us permission to do so.