Who we are
We are the Norrie Disease Foundation, a charity working within the Norrie community in the UK. Our aim is to promote vital new research and provide more support to families by further strengthening the Norrie network.

What is Norrie Disease
Norrie disease is a rare X-linked genetic condition which causes boys to be born blind or with severe sight impairment. Secondary symptoms can include progressive hearing loss, cognitive impairment, autism and delayed development.

How we can help
If you are visiting this page as a family with a new diagnosis of Norrie disease, we want you to know that you are not alone. The Norrie community is growing, it is strong, and keen to support, hear and share experiences.

As with any rare disease, it is difficult to know the exact numbers affected. We believe there are approximately 500 families worldwide. However, as awareness of the condition is increasing more patients are being diagnosed with Norrie disease and our community is growing.

We work with the international Norrie community, sharing information and resources.

How you can help
Sign up to learn more about the Norrie Disease Foundation and join our community.

If you are a healthcare professional or a researcher interested in Norrie disease we would like to hear from you to explore how we can work together.

The Norrie Disease Foundation does not offer advice. We promote research and share experiences and contacts. Please contact a healthcare professional for medical advice.