Welcome to
The Norrie Disease Foundation
Norrie disease is a rare genetic condition causing blindness/severe visual impairment from birth, as well as many secondary conditions including progressive hearing loss. It affects mainly boys.
The Norrie Disease Foundation is a UK based charity. We promote pioneering research into Norrie disease and provide vital support to families.
Research into Norrie disease is severely underfunded, and won’t happen unless we fund it.
The limited research into Norrie disease hearing loss has already made a difference but the only way we can get more answers and results is to get more research done.
Understanding the basic science of the hearing loss will enable researchers in the future to develop clinical trials of therapies to prevent the hearing loss from happening, or to slow down, or stop, the progression.
This will change the future for our blind community who have already lost one sense.
You can donate to the Research Fundraising Appeal here.
Imagine the difference these could make for families living with Norrie disease.
The NDF medical advisory board is driving Norrie research in the EU/UK.
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 is guided by the Scientific Medical Advisory Board in scientific matters including research efforts and direction. Our board consists of renowned experts in the field and we are very grateful to them for giving their time and expertise.
If you are visiting this page as a family with a 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.
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.”
2020 Fundraising
/0 Comments/in Fundraising, News, Uncategorized /by Tina Waldock2020 has been extraordinary for many reasons, not least for the fact that we have been living through a world pandemic, but also for the remarkable ways the Norrie Disease […]
Educational Setting Leaflet
/0 Comments/in Education, News /by Tina WaldockThe NDF Educational School Leaflet aims to provide general information about Norrie Disease (ND), its management and how to support the education of children and young people in schools and […]
11th-12th July Keep Our Worlds From Fading To Silence Fundraiser
/0 Comments/in News /by Tina WaldockThis will be huge! Anthony Ryers who has Norrie Disease & XiJaro & Pitch are live streaming some incredible Trance tunes in a massive Norrie Disease fundraising marathon.