Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses.

The five rarer forms of dementia that we support are:


Watch out for these upcoming events:



Saturday 13th May 2017

Time: Arrival from 10:30 for tea and coffee. The meeting will start at 11:00 and finish at 15:00. A light sandwich lunch will be provided. (Please advise us of any special dietary requirements you may have and we will endeavour to accommodate these accordingly. Vegetarian options will always be available).

Location: The Hub (5th Floor), The Wellcome Collection, 183 Euston Road, London NW1 2BE

Directions: https://wellcomecollection.org/visit-us/getting-here. On entering The Wellcome Collection building, you will find the lifts on the left-hand side in the lobby area, just past the visitor welcome desk. Please take the lift to the 5th floor. On arrival at the 5th floor, turn left and you will find the entrance to The Hub.


11:00                    Welcome Prof Nick Fox, Director of the Dementia Research Centre

11:10 – 11:40     Current Trials in Familial Dementia Dr Catherine Mummery, Consultant Neurologist, Dementia Research Centre

11:40 – 12:40     Facilitated Discussion – Trial Designs: How they are run, ethics, blinding and any questions Prof Nick Fox

12:40 – 13:00     Created Out of Mind: Shaping Perceptions of Dementia Through Art and Science Prof Sebastian Crutch, Director, Created Out of Mind, and Neuropsychologist, Dementia Research Centre, UCL

13:00 – 14:00     LUNCH During lunch, guests will have the opportunity to engage in various Created Out of Mind arts and research activities

14:00 – 15:00     Guests are invited to join the relevant group for a dementia-specific discussion session:

  • FAD group: led by Prof Nick Fox and Dr Natalie Ryan, Clinical Research Associate & Specialist Registrar, Dementia Research Centre, UCL
  • fFTD group: led by Dr Susie Henley, Clinical Psychologist,  Dementia Research Centre, UCL and Rare Dementia Support Adviser

15:00                    Formal Close Prof Nick Fox & Dr Susie Henley 

RSVP: If you would like to attend this meeting, we kindly request that you RSVP by Tuesday 9th May. We fully appreciate that your circumstances can change nearer the time; should you no longer be able to attend after registering, please let us know.

To RSVP for any of our support group meetings, please email: contact@raredementiasupport.org or J.Junghaus@wellcome.ac.uk

(past event details and forthcoming fundraising/meetings can be found here)

More dates for 2017….

Saturday 13th May 2017 – Joint fFTD and FAD Support Group Meeting, London
Monday 12th June 2017 – FTD Carers Support Group Meeting, London
Friday 14th July 2017 – PCA Support Group Meeting, London

Further information regarding location and agenda will be confirmed in due course – please check back.

Our vision is for all individuals with or at risk of one of these rarer forms of dementia to have access to specialist information, support and contact with others affected by similar conditions.

Rare Dementia Support is a fund held by The National Brain Appeal (registered charity number: 290173).