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Welcome to
The Norrie Disease Foundation

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.

 

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.

 

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 medical advice. We promote research and share experiences and contacts. Please contact a healthcare professional for medical advice.

The Norrie Disease Foundation Launches

Saturday 13th May saw the culmination of a year’s hard work and preparation as the Norrie Disease Foundation launched at University College London, Great Ormond Street, Institute of Child Health.

 

Around 70 guests gathered to celebrate the start of what promises to be an exciting journey for the Norrie Disease Foundation – a strengthening of the Norrie network and the promotion of vital new research into the condition.

 

Familes met on Sunday 26th February 2017

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©‎ Copyright Norrie Disease Foundation 2017

The Norrie Disease Foundation

PO Box 12476

Colchester

CO1 9RB

The Norrie Disease Foundation Logo
Familes met on Sunday 26th February 2017
Familes met on Sunday 26th February 2017
Familes met on Sunday 26th February 2017
Familes met on Sunday 26th February 2017
The Norrie Disease Foundation Logo