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.
With £60,000 we can fund the following:
- £50,000 towards a Sparks and Great Ormond St Hospital Children’s Charity national funding call to improve the treatment or quality of life of patients with Norrie disease, particularly focusing on the Norrie disease progressive hearing loss.
- Two NDF family days per year – providing essential peer and emotional support to the whole family affected by Norrie disease.
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.”
Strictly come fundraising
/0 Comments/in Fundraising, News /by Tina WaldockNDF trustee, Theresa Peacock, turned the big Four-O earlier this year and to celebrate she held a Strictly Come Dancing themed party!
Well done Oliver!
/0 Comments/in Fundraising, News /by Tina WaldockA huge thanks to our first ever London Marathon runner. He raised an incredible £2,300!
Rare disease awareness month – a time to share
/0 Comments/in News /by Tina WaldockBefore having a child born with a rare condition, I never understood how a disability could affect your life, what it was like to live it every single day and how other people showing understanding, compassion and inclusion could help you to live the life you lead.