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Norrie Disease Foundation

Norrie Disease Foundation

Who we are

Imagine a world without sight.

Now imagine it without sound too.

This is the reality facing children, young people and adults with Norrie disease, a rare genetic condition. There is no cure.

You can help the Norrie Disease Foundation fund research and provide peer support services that could completely change the lives of those living with the condition.


The Norrie Disease Foundation provides support to families in the UK affected by Norrie disease.


Norrie disease is an incurable rare genetic condition causing mainly boys to be born blind and develop progressive hearing loss.


Our aims are to:

  • CREATE a brighter and better supported future for the Norrie community;
  • STRENGTHEN the Norrie Network; and
  • Proactively ENGAGE with the medical and research community


Why are we fundraising?

  • Research: Understanding the causes of the hearing loss will enable researchers 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.
  • Family Days: providing peer support to the whole family affected by Norrie disease. Click here to read Ethan's account of attending a Family Day and why they are so important.

Thank you for your support!

Find out more

Charity details

Registered address
Norrie Disease Foundation,Po Box 12476

Charity number

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