Family Connections

Sometimes 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 rare inherited retinal disease (IRD), like Leber congenital amaurosis (LCA), can feel isolating, but it doesn’t have to be.

Our Family Connections program makes it easy to connect with another individual or family affected by LCA or another rare IRD by phone or email. Whether you want to share experiences, ask questions, or just have someone listen, we can help you get in touch with someone who understands your journey. 

We keep it pretty simple — complete the form on this page and one of our Hope in Focus 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.

Ready to connect? Fill out the form today and take the first step toward support, understanding, and community.