Rare Dementia Support is a UK based service provided by the UCL Dementia Research Centre (DRC). The Dementia Research Centre is a hub for world-class clinical research into dementias. The work of the DRC focuses on identifying and understanding the disease processes that cause dementias, researching the factors that influence these disease processes, and understanding how best to support people with dementia and their families.
Rare Dementia Support is funded by the National Brain Appeal and run by small team based at the DRC.


The RDS Team

Clinical Lead for Rare Dementia Support
- Sebastian Crutch, Consultant Psychologist

- Kirsten Perkins, Clinical Psychologist

Regional Groups
- Roberta McKee-Jackson

Frontotemporal Dementia, FTD
- Jonathan Rohrer, Consultant Neurologist

- Hannah Carr, Psychology Research Assistant

Primary Progressive Aphasia, PPA
- Jason Warren, Consultant Neurologist

- Chris Hardy, Postdoctoral Research Associate

Nikki Zimmermann, PPA Support Group Advisor

Posterior Cortical Atrophy, PCA
- Sebastian Crutch, Consultant Psychologist

- Emma Harding, Psychology Research Assistant

Familial Frontotemporal Dementia, fFTD
- Jonathan Rohrer, Consultant Neurologist

- Katrina Moore, Psychology Research Assistant

Familial Alzheimer’s Disease, FAD
- Nick Fox and Natalie Ryan, Consultant Neurologist

- Ivanna Pavisic, Psychology Research Assistant

Lewy Body Support Group (DLB)

- Dr Rimona Weil, Consultant Neurologist

Dr Angelika Zarkali, Alzheimer's Research UK Clinical Research Fellow