Change lives and make a difference to those living with Norrie disease.
Promoting research and raising awareness of Norrie Disease.
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.
Simon Reeve – NDF Ambassador
“Having an organisation like the Norrie Disease Foundation to raise awareness of the challenges people living with Norrie disease face and to provide vital support can make all the difference to the children and families affected. I’m happy to be able to support a worthwhile charity.”
On Saturday 24th February the Norrie Disease Foundation enjoyed its 4th Family Day. It was a great way to have an early celebration for Rare Disease Day. It was fantastic to welcome back families we had met before and new families.
https://norriedisease.org.uk/wp-content/uploads/2018/04/Norrie-meet-with-families-and-GOSH-staff-e1525106198814.jpg240320adminhttps://norriedisease.org.uk/wp-content/uploads/2017/07/norrie-logo.pngadmin2018-04-30 16:42:432018-04-30 16:53:09NDF's 4th Family Day
November’s Norrie Disease Research Update at UCL GOSH by Dale Bryant, 30th November 2017. Norrie disease is caused by mutations in […]
https://norriedisease.org.uk/wp-content/uploads/2017/07/norrie-logo.png00adminhttps://norriedisease.org.uk/wp-content/uploads/2017/07/norrie-logo.pngadmin2017-12-05 13:05:262017-12-06 11:02:39Investigating Norrin in the Laboratory