Living with Norrie Disease

Living with Norrie Disease

Help, reliable information and emotional support

Norrie Families enjoy at day out

Living with a child with complex needs affects every member of the family. 

One of the Norrie Disease Foundation's main aims is to provide vital support to families with a diagnosis of Norrie Disease. We do this through research,  information and events like our fabulous family days which allow parents and siblings to talk to others in the same situation as themselves.

In this section of the website you can find information, links and inspiring stories to help you live with Norrie Disease along with details of our family days and other events.



We didn’t want families to feel as alone as we did after our son’s diagnosis. Sharing information and resources is vital for families who have a child with a rare disease and new research gives us hope for the future.

T & K, parents of a child with Norrie disease


The NDF is important to me because it means I can connect with other people like me. I am also worried that one day I might start to lose my hearing, the NDF gives me hope for the future.