Family Connections

blind skiersSometimes you just want to talk to someone who is in the same situation as you. Being diagnosed (or having a family member diagnosed) with a disease classified as “rare” can be isolating and lonely, but it doesn’t have to be!

Our 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.

We keep it pretty simple — complete the form on this page and one of our Sofia Sees Hope team members will reach out to confirm your information and anything else you want to share. Then we’ll make an email introduction for you with 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 and we will only share your information with another LCA or IRD family or individual who has also given us permission to do so.