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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
FDA Grants Fast Track Designation for AJ201
AnnJi Showcases Promising Results for AJ201 in Kennedy’s Disease Clinical Trial
Luke’s Story
Canadian Protocol Release
🏃♀️ Run for KD-UK at the Bath Half Marathon 2026!
Extended Funding
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.
