Rarer types of dementia – useful organisations

Useful organisations

CADASIL Support UK
info@cadasilsupportuk.co.uk
www.cadasilsupportuk.co.uk
www.facebook.com/groups/cadasilsupportCADASIL Support UK is a charity that provides support and advice. It also raises awareness of the condition. It provides mutual support through its Facebook group.

Cambridge Stroke
info@cambridgestroke.com
www.cambridgestroke.com/cadasil.php
This website is run by clinicians and researchers at the University of Cambridge, which has a CADASIL clinic at Addenbrooke’s Hospital in Cambridge. The website has information about CADASIL and links to other organisations that provide support.

Huntington’s Disease Association
0151 331 5444 (9am–5pm Monday–Friday) 
info@hda.org.uk
www.hda.org.uk
Huntington’s Disease Association provides information, advice, support and publications for families affected by Huntington’s disease in England and Wales. The Association can help people contact a regional adviser and their nearest branch or support group.

Mildmay Hospital
020 7613 6300
info@mildmay.org
www.mildmay.org
Mildmay Hospital in east London provides inpatient and day care services for people who are affected by HIV-related cognitive impairment. Hospital or community services can refer people to Mildmay Hospital.

National CJD Research & Surveillance Unit
0131 537 1980
contact.cjd@ed.ac.uk
www.cjd.ed.ac.uk
National CJD Research & Surveillance Unit researches prion diseases such as CJD. A person may be referred to the unit in Edinburgh if they have sporadic CJD.

PSP Association
0300 0110 122
helpline@pspassociation.org.uk
www.pspassociation.org.uk
PSP Association is a charity that provides information and support to people living with PSP and CBS. It also funds research into treatments and finding a cure.

Rare Dementia Support
020 3318 0243
contact@raredementiasupport.org
www.raredementiasupport.org

Rare Dementia Support runs specialist support services for people who are living with (or affected by) one of five rare dementia diagnoses:

• familial Alzheimer’s disease (fAD)
• frontotemporal dementia (FTD)
• familial frontotemporal dementia (fFTD)
• posterior cortical atrophy (PCA)
• primary progressive aphasia (PPA).

Shine
01733 555988 (9am–5pm Monday–Friday) 
firstcontact@shinecharity.org.uk
www.shinecharity.org.uk

Shine is a charity that provides information and advice for people with hydrocephalus (and spina bifida).

Review details

Our information is based on evidence and need, and is regularly updated using quality-controlled processes. It is reviewed by experts in health and social care and people affected by dementia.

Reviewed by: Dr Tim Rittman, Senior Clinical Research Fellow, Department of Clinical Neurosciences, University of Cambridge and Dr Lucette Cysique, Senior Lecturer, Faculty of Medicine, University of New South Wales, Sydney, Australia

This information has also been reviewed by people affected by dementia.

To give feedback on this factsheet, or for a list of sources, please email publications@alzheimers.org.uk