Further support for Kennedy’s disease
Support with Kennedy's disease can help improve quality of life for people living with or affected by this rare condition. It progresses more slowly than MND, so you may be looking for specialist help. See below to find out more.
"I always look back to the time of my initial diagnosis… a lot has changed for me since then and I've been helped along the way with the knowledge that support is out there, it’s just a case of knowing where to look for it." Person with Kennedy's disease
How can the MND Association support me?
Although not a form of motor neurone disease, the MND Association is here for you if you need support with Kennedy's disease.
We provide a detailed information sheet about Kennedy's disease.
Due to having similar symptoms to MND, you may find many of our resources helpful in our range of information for people with or affected by MND.
If you are living with or affected by Kennedy's disease, you can access all our MND Association services, including our MND Connect helpline and MND Support Grants. For more information and a list of all our services, see our services page.
Where can I get specialist support from health and social care professionals?
Ask your GP for a referral to a neurologist who is familiar with Kennedy's disease.
Due to its rarity, there is only one dedicated clinic in the UK in London offering support with Kennedy's disease. The clinic can provide access to multidisciplinary care, a specialist nurse and ways to get involved in research. Watch the video at the top of this page to find out about the clinic.
You can also contact our MND Connect helpline for guidance on MND care centres and networks in the UK, where Kennedy's disease is also supported. Your closest MND care centre or network, or neuro clinic may be helpful if you cannot get to the Kennedy's disease clinic in London.
How can I contact other people living with Kennedy's disease?
Support for people living with or affected by Kennedy's disease can be difficult to find, due to the rarity of the condition. The following may help you share support with others affected by the condition:
Kennedy's Disease UK (KD-UK)
A UK based charity focused on awareness of Kennedy's disease and funding for research into the condition.
Kennedy's Disease Association (KDA)
An American organisation supporting people with Kennedy's disease. Their website includes a blog and you may be able to virtually meet other people living with Kennedy's disease on the online forum.
Kennedy's disease raising awareness (Facebook group)
A Facebook group for people living with the condition. Please note that the MND Association is not responsible for the group or moderation of its content.