The Great Road Trip - Donate Now


Kennedy's Disease Patient Day 2022

Free Event - Sunday 10 July 2022


The Great Road Trip Celebration Dinner

July 8, 2022 | 7:00 The Duchess of Cornwall Inn, Poundbury


Kennedy's Disease UK


The Great Road Trip


News & Events


Who we are

We are the only UK based charity for Kennedy’s Disease (KD); a non-profit organisation run by volunteers and sufferers. We realise that more is needed to help raise the awareness of this awful disease and we want to make sure that people out there hear about Kennedy’s Disease and the effect it has on sufferers, carers, family and friends. There is only one centre carrying out vital research in the UK and we hope that our efforts will help them to find a cure for the disease.

What is Kennedy’s Disease

Kennedy’s Disease is a rare inherited neuromuscular disorder characterised by the degeneration of lower motor neurons within the spinal cord and brainstem.

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Kennedy’s Disease Clinic

Dr Pietro Fratta and Prof Michael Hanna now run a Kennedy’s Disease clinic at the National Hospital for Neurology and Neurosurgery in London.

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Fundraising for KD-UK

Fundraising is absolutely critical to fund the ongoing research into Kennedy’s Disease and there are many creative ways in which you can help us.

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The challenges of living with Kennedy’s Disease

Latest news

The Great Road Trip Celebration Dinner

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The Great Road Trip Celebration Dinner will be taking place at 7pm on July 8 at The Duchess of Cornwall Inn, Poundbury. The event costs £50 per person and guests…

Kennedy’s Disease Patient Day 2022

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The Patient Day on 10 July 2022 in London is now open for registration.  This is a free event for sufferers and carers. It is an excellent opportunity to engage…

The Great Road Trip is GO!

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The 2022 Great Road Trip in our Citroen 2CV is in track.  The car is travelling across the USA in April/May and starts its European trip from Lands End to…

UCL testimonial

I can’t thank Kennedy’s Disease UK enough. There is currently no cure or treatment for this rare disease, and patients are struggling without the care and support they need. KD-UK’s tireless work to raise funds for UCL’s research into our understanding of this disease and the development of potential treatments, and their efforts to raise awareness of the disease and help others to access critical information, is invaluable. With KD-UK’s help, UCL research is making important progress and we are incredibly grateful for their support.

Professor Linda Greensmith, Research Lead at UCL