Our Mission: Research and Support
The Norrie Disease Foundation is a UK based charity. Our mission is to:
- Promote and raise funds for pioneering research into slowing or preventing the Norrie Disease hearing loss
- Strengthen a UK network through raising awareness of Norrie Disease and patient involvement
The formation of the NDF
The NDF was created in 2017 by 3 families who connected because they each had a son with Norrie Disease.
They were all experiencing the challenges faced of supporting a child with a rare genetic condition which had no active research, no reliable information or a support network.
Initially Chair Wendy Horrobin, met the late Professor Maria Bitner-Glindzicz, a brilliant leader in her field of genetic deafness at Great Ormond street Institute of Child Health. Maria wanted to try and help find a treatment for the Norrie Disease hearing loss and support a family network.
Professor Maria Bitner Glindzicz was the driving force behind setting up the NDF's Scientific Medical Advisory Board and pioneering research into preventing the hearing loss. This research is still ongoing at Great Ormond Street Institute of Child Health.
Maria, through her guidance, support, kindness and expertise gave Wendy, Kelly and Theresa the confidence to move forwards with the NDF.
Between 2017 and the end of 2020 we have directly raised over £190,000 which has been spent on research and family support. Please see the fundraising section of our website for more information and details of how you can help.