Change lives and make a difference to those living with Norrie disease.
Jeans for Genes 2018 – Sign up and support us
The Norrie Disease Foundation are super pleased to announce that we are receiving a grant from money raised on Jeans for Genes Day 2017. The grant will fund a family fun day, bringing families together, to share experiences and information and support each other whilst enjoying lots of fun activities.
Jeans for Genes Day – 21st September 2018
Help the Norrie Disease Foundation create a brighter future for the Norrie community by nominating the charity for Jeans for Genes Day 2018!
Tell them to tick the box marked “Click here if you are affiliated to one of our partners” then select the Norrie Disease Foundation
Thank you so much!
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 Sunday 20th May an amazing 650 parents and children ran either 1 mile or 5 km to raise funds for the Norrie Disease Foundation, Shine Cancer Support and the Age Exchange raising an incredible £2,054.
https://norriedisease.org.uk/wp-content/uploads/2018/07/heath-for-health-warm-up.png480640Tina Waldockhttps://norriedisease.org.uk/wp-content/uploads/2017/07/norrie-logo.pngTina Waldock2018-07-17 19:25:082018-07-17 19:38:29Heath For Health 2018 – Amazing £2,054 raised for the Norrie Disease Foundation
Josh was born blind and was diagnosed with Norrie disease when he was one month old. Now nine years old, he interviews Professor Maria Bitner-Glindzicz, who is carrying out research to prevent the hearing loss also caused by the condition.
https://norriedisease.org.uk/wp-content/uploads/2018/06/Screen-Shot-2018-06-28-at-00.19.11.png644984adminhttps://norriedisease.org.uk/wp-content/uploads/2017/07/norrie-logo.pngadmin2018-06-27 23:22:392018-06-28 12:40:24Deafblind Awareness Week 25th June - 1st July 2018
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