Kennedy's Disease UK

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 KDUK

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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Latest news.

KD-UK Patient Day

Kennedy’s Disease Patient Day

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We are delighted that the first ever Kennedy’s Disease Patient day is being held in the UK. This is a landmark occasion and we need as many families as possible…


Spaces available…Prudential Ride 100 – 30th July 2017

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PRUDENTIAL RIDELONDON 100   How about riding the Prudential RideLondon 100 for KD-UK at on Sunday 30 July 2017? This is a hugely popular event which 85,000 people enter via...

Windsor Half Marathon 21st May 2017

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Looking for a challenge in 2017? How about running for KD-UK at the Royal Windsor Half Marathon Trail Run on Sunday 21st May 2017?  We think it’s up there as...

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

Our supporters.