Kennedy's Disease UK


COVID 19 and Kennedys Disease


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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Latest news.

2021 Conference

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Save The Date KD-UK is once again planning to join forces with the American based KDA to participate in their 2021 Conference. The conference is going virtual one more time.…

Moving Forward Together

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2020 KDA/KD-UK Conference We're delighted to announce that 'Moving Forward Together - 2020 KDA/KD-UK Conference' will be held from Wednesday, October 14, at 10:00am EDT to Thursday, October 15, 2020…

BREAKING NEWS – COVID 19 update from UCL

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Please see below some general advice from Dr Fratta and Dr Rinaldi at UCL with regard to Kennedys Disease and the COVID 19 virus.   23 February 2020 This is…

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.