What is Norrie Disease?
Imagine a world without sight, now imagine it without sound too.
Norrie Disease is a rare genetic condition causing blindness/severe visual impairment from birth, as well as many secondary conditions including progressive hearing loss.
Medical Advisory Board
The Norrie Disease Foundation is guided by its Scientific Medical Advisory Board in scientific matters including research efforts and direction under the leadership of Professor Jane Sowden.
Our board consists of renowned international experts in the field and we are very grateful to them for giving their time and expertise to the Norrie community.
Living with Norrie Disease
If you are visiting this site 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.
Donate or FundraiseResearch into Norrie disease is severely underfunded
You can help the Norrie Disease Foundation fund research that could completely change the lives of those living with the condition, and stop our blind community going deaf.
Donate or Fundraise for us.
What we do
The Norrie Disease Foundation is a UK based charity.
We promote pioneering research into Norrie Disease and provide vital support to families living with the condition.
Take part in the natural history study
Calling more people affected by Norrie Disease to take part in the natural history study.
If you haven’t already taken part in the study or want to ask any questions please email Dr James Arwyn-Jones at J.arwyn-jones@ucl.ac.uk who can help you complete the study.
Latest news and family stories
Join the National Norrie 25km fundraising walk weekender 5th & 6th September
James Arwyn-Jones receives prize for best Otology oral presentation at BACO 2026
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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.”
