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 £30,000 we can fund the following:
- £20,000 towards pioneering gene therapy research to prevent Norrie disease hearing loss.
- Two NDF family days – these provide essential peer and emotional support to the whole family affected by Norrie disease.
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.”
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.
Ethan’s Family Day
/0 Comments/in News /by Tina WaldockThe 24th of November 2018 saw the very first Norrie family day and what a fun day it was. The day involved many different activities and much entertainment, from snakes and snails to inspiring speeches.
The Norrie Disease Association – Bringing the global Norrie community closer
/0 Comments/in News /by Tina WaldockThe Norrie Disease Association held its 4th conference at the Massachusetts Eye and Ear Hospital, Boston.
It was an amazing coming together for around 26 families from the US, Canada, Belgium, UK, Argentina.