Further support for Kennedy’s disease
Kennedy's disease is a rare condition that progresses more slowly than MND, so you may be looking for specialised support. Select from the following to find out where you can get further support if you are living with Kennedy's disease.
"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
Although not a form of motor neurone disease, the MND Association supports people living with Kennedy's disease.
We provide a detailed information sheethttps://www.mndassociation.org/app/uploads/2015/07/2B-Kennedys-Disease.pdf on Kennedy's disease. Due to the similarity to MND, you may find many of our other information resources helpful for managing symptoms. See our information for people with or affected by MND page to see the range of resources.
People living with and affected by Kennedy's disease can access all 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.
Ask your GP for a referral to a neurologist who is familiar with Kennedy's disease. You can also contact our MND Connect helpline, who can guide you to centres in the UK where Kennedy's disease is a specialism.
Due to its rarity, there is only one Kennedy's disease dedicated clinic in the UK, based in London. The clinic can provide access to multidisciplinary care, a specialist nurse and opportunities to get involved in research. Watch the video at the top of this page for information about the clinic.
Your closest MND care centre or network, or neurological clinic, can also provide support. This may be helpful if it is too difficult for you to get to the Kennedy's disease clinic in London.
You may wish to seek support from other people living with Kennedy's disease, due to the rarity of the condition. The following may provide opportunities to contact other people living with or affected by Kennedy's disease:
Kennedy's Disease UK (KD-UK)
The only UK based charity for Kennedy's disease. Works to raise awareness of Kennedy's disease and funds research into the condition.
Kennedy's Disease Association (KDA)
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)
This Facebook group may be helpful for people who want to virtually meet others living with the condition. Please note that the MND Association is not responsible for the group or moderation of its content.