2nd December 2023: Norrie Disease Conference
On 2nd December 2023 the first Norrie disease conference in the UK took place at UCL GOSICH and what a milestone!
Click here for a selection of videos and presentations from the conference
29th June 2019: Norrie Family Meet
The Norrie Disease Foundation held its first funded Norrie family meet on Saturday 29th June 2019 thanks to an amazing grant from @jeans_for_genes & @geneticdisordersuk.
Fifteen families met in London and enjoyed soft play; mingling; bouncy castle; trampolining and meeting new and old friends.
24th November 2018: Our very first Family Day
On 24th November 2018, the first official Family Day took place, enabling families to get to know each other and share their experiences of living with Norrie Disease, and what has and hasn’t worked for them. For many this was the first time they had met another family living with the same condition.
Connect
The NDF is important to me because it means I can connect with other people like me. I am also worried that one day I might start to lose my hearing, the NDF gives me hope for the future.
Hope
We didn’t want families to feel as alone as we did after our son’s diagnosis. Sharing information and resources is vital for families who have a child with a rare disease and new research gives us hope for the future.