After connecting with families and members of the community for the first time, we have received stories that they wanted to share. If you wish to share your stories on this page then please contact us.
Community Stories are the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.
Remembering Prof. Maria Bitner-Glindzicz
Sharing in memory of dear Prof. Maria Bitner-Glindzicz – such a kind and amazing geneticist and beautiful human…
RNID Hearing Therapeutics Summit 2025 in London
Such a privilege to attend the RNID Hearing Therapeutics Summit 2025 in London! Amazing to listen to inspirational…
Buddy Dog family day
Josh Horrobin, who is blind and hearing impaired due to Norrie disease, aged 17, joined a Guide Dogs,…
Slovakia Bound
By David Wilkins It’s a time old cliché that a letter or an email can change your life.…
Norrie Family meet
Fifteen families met in London and enjoyed soft play; mingling; bouncy castle; trampolining and meeting new and old friends.
Cameron’s SmileMy New Bed
I came home from school to find my new bed has been delivered. I used to have a…
Strictly come Fundraising
NDF trustee, Theresa Peacock, turned the big Four-O earlier this year and to celebrate she held a Strictly…
Cameron’s Smile – don’t be sad
I was born without it and I will never know any different. You don’t need eyes to see…
Siblings are very important
I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain…
Dual Sensory Loss
I have Norrie disease which is a very rare X-linked genetic condition which causes mainly boys to be born blind or severely sight impaired. The majority of sufferers also experience progressive hearing loss.