Kennedy's Disease UK

Who we are

We are the only UK based charity that solely focuses on Kennedy’s Disease (KD). We are a non-profit organisation run by volunteers and people living with the disease.

We realise that more is needed to help raise awareness of the disease. 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 are two centres carrying out vital research in the UK and we hope that our efforts will help them to find a cure.

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.

Kennedy’s
Disease
Clinic

Neurologists, Pietro Fratta and Carlo Rinaldi run a Kennedy’s Disease clinic at the National Hospital for Neurology and Neurosurgery in London.

Top Tips

These are just a few of the top tips that KD-UK has picked up over the years.  Please E-Mail sam@kd-uk.com if you would like to share your own.

Latest News

Swimming & Kennedys Disease

To inform this next phase of the project, we’re inviting people with NMDs to share their experiences of swimming specifically in pools or hydrotherapy…

Kennedy’s Disease can Impact your hearing

A recent study in Italy has found hearing impairment in Kennedy’s Disease patients….

Passing of our Trustee, Dr Michael Hope

Michael was diagnosed with Kennedy’s Disease in 2023, after more than eight years of navigating a difficult and often frustrating path to a confirmed…

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.

It is estimated that 1 in 7,000 males have the defective gene that causes KENNEDY’S DISEASE.

Sign up for updates