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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 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

NIDO Drug Trial Now Underway

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The NIDO-361 clinical drug trial into a treatment for Kennedy Disease is now underway. NIDO-361 is a gene modification drug and it is at the cutting edge of new research…

Boscastle Shanty Festival

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Many thanks to Anita Symons-Edwards and the team behind the Boscastle Shanty Festival for the exceptional £4,500 donated to KD-UK this week. The money is being ring fenced, along with…

Conference Slides

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We are delighted to be able to share with you the slides taken from the London International Conference 2023 - please see below.

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