Rare Dementia Support (RDS) has launched a new Regional Network Hub in Kent, to support people affected by rare dementias across the county.

The launch event saw around 35 people attending at Gillingham Golf Club, Medway, on Tuesday 24th March.

The new hub will be a warm, welcoming space for people to connect with others facing similar challenges, share stories and practical advice, and access guidance and information tailored to rare dementias. It also means people can link more effectively into local services and community organisations.

The group is being run through RDS at a national level, with Alzheimer’s and Dementia Support Services (ADSS), Kent’s biggest independent charity, which is dedicated to providing support to people affected by dementia, in partnership with NHS Dartford and Gravesham.

The group will meet on the fourth Tuesday of every month from 7pm-9pm at Gillingham Golf Club, and is open to people living in Kent. Anyone wishing to attend must be an RDS member and have a rare dementia or care for a loved one with a rare dementia. It is free to sign up to become a member.

Nikki Zimmermann, Head of Support Services at Rare Dementia Support, said: “We are very thankful for such a wonderful evening launching the new RDS Regional Network Hub in Kent. We had a really lovely time and got to enjoy ‘laughing yoga’ which was so funny. We loved the whole evening.

“We want to thank the team at ADSS for helping us to make this group, it’s what we really need and it will be of such benefit to people living with and affected by a rare dementia across Kent.”

Since 1991, ADSS has been empowering people in north and west Kent and Medway to live well with dementia. Through their Dementia Support, Dementia Care and Dementia Wellbeing services, they aim to help people affected by dementia to manage their symptoms, stay engaged with family, friends and the wider community and take back control of their lives.

Want to know about our Regional Support Hubs and find out how to get involved in your area? Read the FAQs below.

Local hubs, lasting support
Living with a rare form of dementia can often feel isolating. That’s why Rare Dementia Support (RDS) is building a growing network of Regional Network Hubs across the UK – bringing meaningful support, connection and understanding to people locally, while remaining firmly connected to the national expertise and resources of Rare Dementia Support.

The National Brain Appeal has supported Rare Dementia Support (RDS) since the first condition specific support group meetings in 1994 and thanks to a growing number of dedicated RDS supporters who donate and fundraise, it has encouraged the creation of these hubs.  

They will offer regular, in-person meetups for those living with a rare dementia, as well as their families, friends and carers. Each is shaped by its local community, while drawing on RDS’s national expertise to ensure safe, inclusive and informed support.
 
What happens at a hub?
Each hub creates a warm, welcoming space for people to connect with others facing similar challenges, share stories and practical advice, and access guidance and information tailored to rare dementias. It also means people can link more effectively into local services and community organisations.

They are open to anyone affected by one of the seven types of rare dementias supported by RDS. This includes people living with a diagnosis, those who are pre-symptomatic, and the family members, friends and carers who support them.

At their heart, these hubs are about reducing isolation and helping people feel seen, heard and understood – in a way that’s personal, not clinical.
 
Growing across the UK
Hubs have recently launched in Newcastle, Hertfordshire and Kent, alongside an established local group in Powderham, Devon. More are on the way in Salford/Manchester, Cambridge and Cornwall in 2026.

While each hub has its own identity, they all form part of a joined-up national network – offering a strong sense of community rooted in place. The hubs will complement the new London-based Hilary and Galen Weston Rare Dementia Support Centre which will open its doors in a few months’ time.  
 
Driven by community
What makes these hubs special is that they are shaped by the people who use them. There’s no one-size-fits-all approach. The hubs grow organically, responding to local needs and voices, and are delivered in partnership with healthcare professionals, volunteers and community organisations.
 
Want to get involved?
RDS is always keen to hear from people who want to help. Whether you’re living with a diagnosis, supporting a loved one, working in healthcare or part of a local organisation – your experience and energy could make a real difference. To explore setting up a hub in your area, email contact@raredementiasupport.org.