Rarer types of dementia - other resources

Here you will find a list of other useful organisations that may be able to provide you with further information about rarer types of dementia.

Frontotemporal Dementia Support Group

T 07592 540555

[email protected] 


Provides information, advice and support for people with frontotemporal dementia and their carers. Was formerly the Pick's Disease Support Group.

Huntington's Disease Association

T 0151 298 3298

[email protected] 


Association that provides information, advice, support and publications for families affected by Huntington's disease in England and Wales. They can put you in touch with a regional adviser and your nearest branch or support group.

Mildmay Hospital

T 020 7613 6300

[email protected]


Provides holistic inpatient and day care services for people affected by HIV-related cognitive impairment. Referrals must be made by other hospital or community services.

MS Society

T 0808 800 8000 (free helpline, weekdays 9am-9pm)

[email protected]


Charity providing information and support to anyone affected by MS. Has a national helpline and a network of over 350 local branches.

National Prion Clinic

T 020 7692 2397

[email protected]


Clinic based at the National Hospital for Neurology and Neurosurgery. It provides diagnosis, care and support for patients with, or suspected of having, diseases caused by prions such as CJD.

Niemann-Pick Disease Group (UK)

T 0191 415 0693

[email protected]


Not-for-profit organisation that supports and promotes research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.

Parkinson's UK

T 0808 800 0303 (helpline 9am-8pm Monday to Friday, 10am-2pm Saturday)

[email protected]


Charity that provides information, advice, support and publications for people with Parkinson's disease. They can put you in touch with your nearest branch, offering information, support and social contact for people with Parkinson's and their families.

Posterior Cortical Atrophy Support Group

T 07592 540 555

[email protected]


Provides information and support to people with PCA, and their families, friends and healthcare professionals.

PSP Association

T 0300 0110 122 (helpline, Monday to Friday 9am-5pm and 7pm-9pm)

[email protected]


Charity that provides information and support for families affected by progressive supranuclear palsy.


T 01733 555988


Charity that provides information and advice for people with hydrocephalus (and spina bifida).

More information and resources

Last reviewed: March 2015

Next review due: March 2018

Reviewed by: Professor Tony Bayer, Professor of Geriatric Medicine, Institute of Primary Care and Public Health, Cardiff University, and Dr Claudia Metzler-Baddeley, Cardiff University Brain

Research Imaging Centre, School of Psychology, Cardiff University

This information has also been reviewed by people affected by dementia. A list of sources is available on request from [email protected]

More practical and emotional support near you

There are dementia services and support groups in your area. Find out what's available where you are.

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