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.

Find out more

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.

Find out more

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.

Find out more

Latest news.

Should I tell my kids? A childs view.

| News, Stories | No Comments
My name is Izzy. I am twelve years old and my dad is a sufferer of Kennedys Disease. Kennedys Disease is a rare motor-neuron disease that effects men and is...

Pub Quiz Night Raises Awareness and Funds…

| Fundraising, News | No Comments
The Napoleon Inn, Boscastle organised a pub quiz night to raise awareness of Kennedy’s Disease and also to raise funds for much needed research into this rare disease. Many thanks...

Kennedy’s Disease Patient Day

| Events, News | No Comments

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…

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.