Family Connections

blind skiiersSometimes 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. It makes you feel like there is no one else in your situation.

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 — email and we will send you a form to fill out. One of our Sofia Sees Hope team members 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.

Want to learn more?

If you would like to participate in our Family Connections program please email and we will send you a form to fill out.