The Norrie Disease Foundation was formed in 2017 by 4 parents of children with Norrie Disease. This was in response to there being no UK Norrie support network for families affected by Norrie Disease, no reliable information, and no research into the condition and no hope. 

Norrie Disease is a rare genetic condition causing blindness/severe visual impairment from birth. Most affected individuals also suffer from progressive hearing loss often starting in early childhood. People with Norrie Disease say that the progressive hearing loss is the worst part of having Norrie Disease as they have become so reliant on their hearing, their most vital sense.

The Norrie Disease Foundation asked the UK Norrie Disease community what they wanted the charity to focus on in 2017 and the overwhelming response was to find a treatment for the devastating hearing loss. 

The Norrie Disease Foundation now has a dedicated Scientific Medical Advisory Board based at Great Ormond Street Institute of Child Health comprising of world-renowned researchers, geneticists, surgeons and clinicians. Thanks to the Medical Advisory Board's tireless efforts the Norrie Disease Foundation is moving forwards with pioneering research into finding a treatment to stop the hearing loss. It's a long and bumpy journey but ground breaking progress into treating the Norrie Disease hearing loss is taking place.

This small charity run entirely by a hand full of volunteers is completely reliant on donations and fundraising to keep the research alive, driven by the traumatic and brutal impact that the hearing loss causes their already blind community.   

Supporting this research gives the Norrie community hope for a much brighter future. Thank you so much for your support!

www.norriediseasefoundation.org.uk

"Every day we dread knowing we will have to tell our son that he is losing his hearing too. We don't know how he will cope or us.”