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:

PPA Support Group Meeting – Thursday 27th April 2017

Time: Please arrive from 10.30am for tea and coffee. The meeting will start at 11am and finish at 2pm.

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

Agenda: ‘Julian West and students from the Royal Academy of Music, will lead us in a morning of music’.

Julian West is part of the core team to be invited by the Wellcome Trust to take up the 2016-18 residency in The Hub at the Wellcome Collection. The group, which includes scientists, artists, clinicians, public health experts and broadcasters, is examining and challenging perceptions of dementia through scientific and creative experimentation.

Over the last 20 years, Julian West has combined a career as an oboist with developing ground-breaking creative learning and participation projects for many organisations, including Wigmore Hall, Glyndebourne Opera, Britten Sinfonia and Spitalfields Music.

Julian remains at the forefront of the development of this field of work. Alongside a busy freelance career, he is currently Head of Open Academy, the Royal Academy of Music’s creative learning and participation programme, where he lectures on creative music leadership and researches into best practice, as well as devising and leading exciting projects with some of the world’s most talented young musicians.

After lunch, Caroline Gee, Registered General Nurse at MedicAlert will provide information for those diagnosed with PPA, their families and carers on MedicAlert’s unique support service and the peace of mind and independence that it offers. Caroline works with a small team of nurses at MedicAlert helping to create medical records that are comprehensive, accurate and useful in the event of an emergency.

To close the day, Dr Jon Rohrer, Consultant Neurologist from the Dementia Research Centre will facilitate a Q&A session. We invite support group members to submit any questions you may have in advance of the 27th April and we will present these to Dr Rohrer to address in the Q&A session. Of course there will also be an opportunity to ask questions on the day.

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).