Welcome to
The Norrie Disease Foundation
Change lives and make a difference to those living with Norrie disease.
Prof Maria Bitner-Glindzicz
The Norrie Disease Foundation and its Medical Advisory Board are devastated to share the sad news of Professor Maria Bitner-Glindzicz’s passing. Maria was a dear friend to the Norrie community and a brilliant geneticist and researcher. She was the driving force behind the creation of the Norrie Disease Foundation, the formation of its Medical Advisory Board and the pioneering research she initiated into the Norrie Disease hearing loss to see if it can be treated with gene therapy. The Norrie Disease Foundation wouldn’t be where it is today without all her incredible support.
Maria went out of her way to meet and listen with families to see how she could help them; she was our champion and committed advocate. Maria took a personal interest in all of the families she came across and went to great lengths to help each and every one of them. For a researcher to agree to help such a rare community was incredibly precious. Maria will be so missed by the Norrie community and throughout the genetic and hearing world. She was one in a million. Our thoughts are with her family and friends at this sad time.
Promoting research and raising awareness of Norrie Disease.
Who we are
We are the Norrie Disease Foundation, a charity working within the Norrie community in the UK. Our aim is to promote vital new research and provide more support to families by further strengthening the Norrie network.
What is Norrie Disease
Norrie disease is a rare X-linked genetic condition which causes boys to be born blind or with severe sight impairment. Secondary symptoms can include progressive hearing loss, cognitive impairment, autism and delayed development.
How we can help
If you are visiting this page as a family with a new 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.
As with any rare disease, it is difficult to know the exact numbers affected. We believe there are approximately 500 families worldwide. However, as awareness of the condition is increasing more patients are being diagnosed with Norrie disease and our community is growing.
We work with the international Norrie community, sharing information and resources.
How you can help
Sign up to learn more about the Norrie Disease Foundation and join our community.
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 does not offer advice. We promote research and share experiences and contacts. Please contact a healthcare professional for medical advice.
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.”
ND Awareness Week
/0 Comments/in News /by adminOur first ever Norrie Disease Awareness Week has begun! This week, we will be sharing information about what #NorrieDisease is, what it’s like for families living with Norrie disease, the achievements of our community, and shining a spotlight on pioneering research.
Run for team NDF in 2019
/0 Comments/in Fundraising, News /by Tina WaldockDo you want to run and raise funds for the Norrie Disease Foundation?
We have secured charity places at the 2019 Brighton and London marathons and the Bath Half marathon. All are iconic events on the running calendar which sell out every year.
Prof Maria Bitner-Glindzicz
/0 Comments/in News /by adminThe Norrie Disease Foundation are devastated to share the sad news of Professor Maria Bitner-Glindzicz’s passing. Maria was a dear friend to the Norrie community and a brilliant geneticist and researcher.