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International KD Conference

London, 4-7 November 2023

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

TGA Partnership

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TGA has partnered with the charity Kennedy’s Disease UK so people with the condition can more easily benefit from its mobility scooters, wheelchairs and powerchairs. TGA already works with several…

Cycling for Kennedy’s Disease

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A group of very intrepid cyclists are cycling across the alps this July in aid of KD-UK.  Many thousands of feet going up and down mountains! Please click the button…

A Warm Welcome to Samantha

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We are very pleased to announce that Samantha has joined the team at KD-UK as our charity administrator. Sam can be contacted at

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