We run specialist support group services for individuals living with, or affected by a rare dementia diagnosis including: FAD, FTD, fFTD, PCA, PPA, LBD & YOAD
London, England
Joined September 2015
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On this Rare Disease Day, which is also RDS' 9th birthday, we're delighted to announce the exciting news that we've reached our fundraising goal for the new Rare Dementia Support Centre!
#Raredementiasupport #RareDiseaseDay #Dementia
RareDementiaSupport retweeted
EXCLUSIVE: Leading dementia experts have united to urge ministers to lift the NHS block on breakthrough Alzheimer’s drugs.
The Telegraph can reveal that 38 leading specialists have written to Yvette Cooper, the Health Secretary, urging her to help secure NHS access to the first drugs capable of slowing the disease ⤵️
telegraph.co.uk/news/2026/10…
Get your (free!) tickets to the UCL Dementia Research Showcase this Friday. The RDS team would love to see you there! ucl.ac.uk/brain-sciences/eve…
One last time 🏁
After 30+ years, On Your Marques model car & Scalextric museum is opening its doors for one final weekend — raising funds for RDS through @BrainAppeal
📅 29–31 Aug, 10am–4pm
📍 Mumby, Lincolnshire
🎟️Free entry — donations welcome
Donate: justgiving.com/page/on-your-…
🤖 Made with AI
On Saturday we took part in the 2026 DIAD Family Conference, bringing together families affected by familial Alzheimer's disease, hosted in London alongside the #AAIC2026 Our team hosted a welcome tea and supportive discussions with families. @WashU @DrNatalieRyan
We were honoured to welcome families from the Cure MAPT FTD community this week to The Hilary and Galen Weston Rare Dementia Support Centre ahead of the #AAIC2026 A highlight was welcoming @theftdbrothers Jordan and Cian. Thank you to @CureMaptFtd for the incredible work they do!
Join the @alzassociation at #AAICForAll online or in London on 16th July! Register for this no-cost event to get updates from the world’s largest meeting on dementia science. You’ll hear from global experts, including RDS Co-Director, Prof Sebastian Crutch alz.org/aaic-for-all
Thanks to funding from @TheLinburyTrust, this year we’ve delivered creative & cultural activities through arts groups, nature and wellbeing walks and heritage events at Black African & Caribbean community spaces.
#CreativityandWellbeingWeek #DementiaActionWeek #LinburyTrust
This Dementia Action Week and Creativity and Wellbeing Week, find out more about our creative and cultural activities and get involved by going to rarespace.raredementiasuppor…
RDS Champion Julia Roxan is in her local paper today, raising awareness of rare forms of dementia and our service. Thank you Julia! sussexexpress.co.uk/news/fer…
Ten years ago, five rare dementia groups united to create Rare Dementia Support, building on roots that began in 1994 with a nurse-led FTD group at @UCLIoN Today we support 9,000+ members. This #RareDiseaseDay, thank you to everyone who’s been part of our journey.💜 @BrainAppeal
Our Herts Regional Network Hub brought members together for an inspiring session with Peter Taylor, Mayor of Watford, & RDS's Prof Seb Crutch to discuss plans to make Watford a dementia-friendly town, & the unique needs of those living with rare dementias. raredementiasupport.org/hert…
On Saturday 27 June, B Music Festival comes to Trent Park, Cockfosters, for a full day of live music, DJs and summer atmosphere – all in support of Rare Dementia Support, funded by @BrainAppeal Buy you tickets: eventbrite.com/e/b-music-fes…
Join our Head of Support Services, Nikki Zimmermann, for the 2026 PPA Awareness Webinar on 10 April, midday 💜We're excited to be part of the campaign, led by The International SLT/P PPA Network. Sign up 👉speechtherapyppa.com/ppa-awa…
ALT A picture of Nikki Zimmermann wearing a black and spotty white top, smiling at the camera with her hand under her chin
ALT A blue and white logo which says: Primary Progressive Aphasia Awareness - A language led dementia
We're in The Telegraph! Read the newspaper's interview with Professor Nick Fox about spotting the signs and symptoms of rare dementias, as well as an update on The Hilary and Galen Weston Rare Dementia Support Centre which is opening this year. @BrainAppeal @UCLGiving
🧠 Under-65s can wait twice as long for a diagnosis, with symptoms often mistaken for stress or burnout
Find out which signs to look for at the link below 👇
telegraph.co.uk/health-fitne…
RareDementiaSupport retweeted
Today is @dementiaforward Young Onset Dementia Awareness Day 💙 When someone is diagnosed with dementia before 65, life can change in an instant. This film, funded by @RareDementia, shows the difference the charity funded support group makes: youtu.be/8bN7i6lb78E
Earlier this year, Rare Dementia Support began working with partners in Japan to help build awareness, connection and support for people affected by rare dementias. 💜 Watch the video to see more about our team’s recent visit. Full story: raredementiasupport.org/news…
RareDementiaSupport retweeted
Rare Dementia Support has created a short video which gives insight into its Young Onset #Dementia Support Group at St George’s Hospital, London where community and understanding bring together people affected by rare dementias.
Watch the @RareDementia film here: facebook.com/watch/?mibextid…
ALT Regional Support Group video.
RareDementiaSupport retweeted
A free Caribbean film show, chatting and creativity - for Elder Support and Care. Thursday 23rd Oct, 4-7pm, Tramshed 51-53 Woolwich New Road SE18 6ES
#dementiasupport #blackhistory #blackhistorymonth #artsandhistory #perioddrama #storytelling
RareDementiaSupport retweeted
Today we would like to extend heartfelt thanks to all those who have given their support to the centre, as well as the many others whose generosity enables the vital services provided by @RareDementia Support. #WorldAlzheimersMonth
RareDementiaSupport retweeted
The Hilary and Galen Weston Rare Dementia Support Centre will be a permanent home to @RareDementia Support (RDS) and is expected to host 10,000 visitors annually, including people with a rare dementia diagnosis, their loved ones, and healthcare professionals.