Though Norrie Disease is a rare condition you are not alone.
We can help you better understand and live with the disease, we can connect you with other families and offer hope through our commitment to funding and furthering research.
Our aims are to help you:
- by promoting new research into finding a treatment for the hearing loss
- better understand the condition and how to live with it
- become connected with the Norrie Community and to meet other families living with Norrie Disease
- understand what research is happening here in the UK and around the world
- find further information from trusted sources
If you can't find what you need feel free to contact us.
The very best parting gift any parent could give a child with Norrie is teaching them to be as independent as they can be. How to make tea, cook, clean and perhaps even (oh perish the thought) live on their own. It is not easy, there are worries and tears and hazards to be faced along the way. But with this gift a child with Norrie will grow up feeling they are every bit as good as their peers.
It is great to be in touch with other families. As it is such a rare condition you can feel very isolated.