Seb is a professor of neuropsychology and clinical psychologist at UCL, and has been the clinical lead for RDS since its inception in 2016, leading the expansion from large support groups to more intimate small group and one-to-one services. Like his clinical and support work practice, much of Seb’s research – especially into visual forms of dementia – has been inspired by the voices of those living with these conditions.
Seb previously directed the ‘Created Out of Mind’ dementia, science and arts residency at the Wellcome Collection, and currently leads a Marie Curie/Alzheimer’s Society study of palliative care in rare dementias and co-leads the UK Dementia Trials Network (UKDTN) patient workstream.

Suzie is governance manager at the Dementia Research Centre (DRC) and co-lead for RDS. Her background in social work and experience managing the ethical and governance implications of the entire DRC research portfolio across all forms and stages of dementia have informed her leadership of RDS strategy, operations and policy. Her detailed understanding of university, NHS and charity environments will enable our innovative support centre to flourish amongst the traditional taught courses and research departments of UCL, and to be replicated and adapted for other international contexts.

Nikki is the co-lead for RDS and Head of Support Services. With over fifteen years’ experience working in cognitive neurology clinics and memory services, Nikki is an expert in service development and delivery within a variety of health and social care and community settings.
Nikki specialises in pre-diagnosis navigation and post-diagnostic support, especially with families at risk of familial dementias. Nikki also leads on PPIE with RDS associated projects. She looks forward to enhancing the knowledge and understanding of health and social care professionals to enable them to better support people living with rare dementia and their families.

Teca is the Operations Manager of the Hilary and Galen Weston Rare Dementia Support Centre. Drawing on her background as a School Business Manager and an MSc in NGOs and Development, she specialises in operational efficiency, facilities management, compliance, and health and safety. With additional expertise in Public Relations and event management, Teca is driven by a deep commitment to social causes and positive community impact. She is dedicated to supporting the centre’s growth through collaborative, ethical management, aiming to build bridges by balancing clear communication with genuine empathy.

Emma has a degree in health and sociology and has worked in both NHS and private health clinics/hospitals in both administrative, support and lead roles for the last 19 years both face to face and behind the scenes.
Keen to work in an environment where her skills contribute to a “people focussed service”, she is the first point of contact for the majority of RDS enquiries. Emma’s role includes answering initial queries, providing follow up information and signposting to relevant colleagues within the RDS team and also to colleagues within hospital settings and externally, liaising with partner organisations, organising peer groups, co-ordinating our RDS in person seminars and managing RDS events. Emma also supports the RDS team with the development of the regional network hubs and administers the financial aspects of the various RDS service engagements. Emma ensures the smooth running of the RDS service.

Charlie leads the cultural programme at RDS, and oversees ‘Rare Space’, an inclusive teaching, research, and public exhibition space at the heart of the Rare Dementia Support Centre (RDSC). A creative health specialist with over ten years’ experience working alongside RDS and UCL Dementia Research Centre, Charlie has seen first-hand the huge role that cultural activities can play in people’s lives.
He is passionate about programming which champions and promotes the lived experiences of people affected by rare dementias through individual and collective cultural activities, as well as artistic and creative expression.

Jess is a communications consultant with a background in national newspaper journalism. She has written for leading publications including The Daily Mail, The Sun, The Daily Telegraph, The Daily Mirror, and The Times.
For more than a decade, Jess has worked with charities such as Alzheimer’s Research UK, the Internet Watch Foundation, Tom’s Trust, and Global Health Partnerships, using her writing and strategic communications skills to help organisations build a trusted reputation, and raise awareness, and inspire action for their causes.
Jess also has personal experience with familial Alzheimer’s disease having lost her father and several other family members to the disease.

Karen has over 20 years’ experience supporting people living with dementia and their families in the community. She has worked closely for many years with community partners, running NHS post-diagnostic clinics and supporting GPs with annual dementia reviews.
During this time, Karen created and facilitated a number of support groups, including groups for people affected by FTD and other rare dementias. In her RDS role, Karen provides one-to-one support to people affected by rare dementias, and is the RDS Peer Support Group lead. Karen also leads the RDS Champions programme, supporting RDS members to raise awareness of rare dementias in the community.

With a background in studying global health, and experience across diverse healthcare settings, Sidrha brings a broad, people-centred perspective to her work at Rare Dementia Support. She is passionate about creating opportunities for connection and community amongst people affected by rare dementias.
Sidrha is involved in a wide range of activities across the organisation, including the Translation Project, where she led the adaptation of RDS resources into multiple languages to improve accessibility. She also coordinates the Cascaders programme, supporting members to share their lived experiences and actively raise awareness of rare dementias in their communities.

Rosie is an Information, Knowledge and Support Adviser at Rare Dementia Support (RDS) and has a professional background in occupational therapy. After beginning her career as a rotational occupational therapist within a London acute trust, she moved into dementia care, working as part of a specialist in-reach team supporting care homes to deliver high-quality dementia and mental health care. She later joined a Dementia and Delirium Liaison Team in a large London hospital.
In these roles, Rosie provided specialist assessment, advice and support for people living with dementia and their families, alongside reviewing practice, delivering training and contributing to dementia education programmes. Through her clinical experience, she developed a particular interest in supporting people living with rare dementias. At RDS, Rosie provides one-to-one support for people affected by rare dementias and helps facilitate peer support groups.

“I have a background in psychology, and have worked as a Dementia Advisor for over five years, supporting individuals and families to navigate the challenges of a dementia diagnosis with compassion and understanding. I have a particular interest in supporting people living with rare dementias and those diagnosed at a younger age. I’m excited to be part of The Hilary and Galen Weston Rare Dementia Support Centre, where I can continue to build on my experience and contribute to a service dedicated to providing specialist, tailored support. I’m passionate about helping people feel informed, supported, and empowered, and I look forward to being part of a space that makes a meaningful difference in people’s lives.”

“I am delighted to be a part of the support team at Rare Dementia Support, which I join as a Dementia Advisor for the Alzheimer’s Society. Since my first experience of dementia in my family, I have grown my knowledge and understanding of how effective tailored support can be by working 1-1 with people living with dementia as a Dementia Advisor, particularly with families affected by a rare dementia diagnosis. I am incredibly excited to see some of our wonderful members in-person as we move into our new home at the Rare Dementia Support Centre, and to contribute to all the unique support the Centre has to offer.”

Ollie is a research fellow in the department of Clinical, Health, and Educational Psychology at UCL. He is committed to supporting wellbeing of people affected by rare dementias both through support work and research. He has been a part of, and led, research supporting the wellbeing of people living with rare forms of dementia, their caregivers, and those at risk of familial dementias in conjunction with Rare Dementia Support for the last five years. He has also worked to develop guidelines to help health care professionals properly engage you and your communities in a digital world. He runs support groups for various groups of people affected by rare dementias and is committed to the inclusion of the voices people affected by rare dementias in research he develops and delivers.

Sam is a clinical psychologist/neuropsychologist at UCLH and researcher at UCL. She helps lead the Psychology Service within the UCLH Cognitive Disorders Clinic, where she provides psychotherapy to individuals living with or at risk of dementia and their family members. She works closely with RDS in her clinical work and research, including providing psychological support to RDS members, assisting with educational events and workshops, and leading person-centred research projects. As a researcher within the Dementia Research Centre at UCL, her work is aimed at understanding the experience of people living with or at risk of rare forms of dementia and their family members to inform real-world challenges, with specific interests in quality of life, cognitive and neuropsychiatric symptoms, and rehabilitation.

RDS is supported by a number of internationally recognised consultant neurologists, clinicians, academics and researchers, who co-lead our large disease-specific support group meetings in collaboration with Nikki Zimmermann and the rest of the RDS team. They include:

Jonathan Rohrer – FTD & fFTD clinical lead
Jason Warren – PPA clinical co-lead
Chris Hardy – PPA clinical co-lead
Anna Volkmer – PPA clinical co-lead
Keir Yong – PCA support group co-lead
Nick Fox – FAD clinical co-lead
Natalie Ryan – FAD clinical co-lead
Helen Rice – FAD clinical co-lead
Cath Mummery – FAD and YOAD co-lead
Rimona Weil – LBD clinical lead

Aida is an Alzheimer’s Society Dementia Research Leader, Principal Research Fellow and Consultant Clinical Psychologist and Neuropsychologist at UCL. She leads a programme of research focused on mitigating the effects of cognitive disability in people with dementia, particularly those affected by atypical AD, FTD and LBD. She chairs the World Federation of Neurology Aphasia, Dementia and Cognitive Disorders Specialty Group and is Executive Editor, Dementia Topic, at Neuropsychological Rehabilitation. She is co-director of the new UCL Dementia Support and Rehabilitation PGCert, a strategic educational offer of The Hilary and Galen Weston Rare Dementia Support Centre to upskill the professional workforce internationally. She also leads the Cognitive and Behavioural Interventions Service at the National Hospital for Neurology and Neurosurgery, a service run in partnership with the Centre.

Sarah has a background in psychology and a PhD in Applied Health Research. Sarah’s PhD was focused on enabling people living with dementia to engage with contemporary ICTs in line with the rest of the population. Since gaining her PhD in 2015, Sarah’s research has concentrated on creative ways to enable people living with dementia to live as well as possible, often working extensively with underserved communities. At the core of Sarah’s research is always the comprehensive involvement, inclusion and participation of people living with dementia and their loved ones throughout the research process and beyond, ultimately leading to relevant and appropriate interventions.