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nGD Gaucher Family Weekend 2025

On the weekend of 31^st May to 1^st June, The UK Gauchers Association were thrilled to welcome many of our UK nGD families, together with friends from the UK specialist centres and industry, and some special guests from abroad, to join us for the 11^th Neuronopathic Gaucher Disease Family Meeting. It was fantastic to see so many familiar faces and welcome some new ones too and, as always, it was first and foremost a wonderful opportunity for everyone to reconnect and catch up.
 
We had a very full programme which was a mix of fun activities and informative, educational sessions.
 
Saturday morning kicked off with a Family Fun Education session for the whole family. The room was split into 3 areas – a Cell Station, a Genetics Station and a Brain Station. It was a fantastic way for both adults and kids to learn more about the biology, genetics and brain involvement of nGD in fun and practical ways including making DNA out of sweets, thinking about how the functions of a cell are like the key functions of a town centre and using braille and a game dice to think about the brain and how it works.

 
Once the kids headed off for a day full of activities, the rest of the day included sessions on:
 
– new therapies and research in nGD
– the natural history learnings in nGD and how they can be used to improve care going forward
– transition from paediatric to adult care for younger families and Independent Living for adult patients and their families / carers
– audiology in nGD
 
There was also an inspiring personal story from Radhiker Dhayatker. 
 
Everyone had a chance to let their hair down on Saturday evening and the group enjoyed a fabulous dinner. Sunday morning saw the group split into teams to battle it out in the Gaucher Grand Quiz. We then had a reintroduction to the mental health and counselling service, rareminds, which can be accessed by patient and families in the UK via the Association and everyone then split into smaller groups for private space to talk sessions.
 
A wonderful weekend was had by all with interesting and informative sessions, inspiring stories and most of all good times altogether.   

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