Frontotemporal Dementia
The Frontotemporal Dementia Disease Knowledge Page provides reference information on care of frontotemporal dementia.Patient Journey Stories of our Patient Representatives
Disease Knowledge Documents
Information and knowledge that has been developed or endorsed by ERN-RND can be found in blue boxes.
ERN-RND Centres for Frontotemporal Dementia
Care Standards
Available in many European languages .
Clinical Rating Scales
Online Medical Education
Frontotemporal Dementia
- Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice by Lize Jiskoot
- Semantic variant of primary progressive aphasia by Robert Rusina & Zsolt Cséfalvay
- Primary progressive aphasia (PPA) subtyping in clinical practice by Rik Vandenberghe
- Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity by Harro Seelaar
- Fluid Biomarkers in Frontotemporal Dementia by Domenico Plantone
Cross-cutting thematic areas
- Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease by Petya Mihaylova & Mary Kearney
- The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders by Maria Judit Molnar
- Spring School 2026 – ‘RNAseq in RD’ by Diana Baralle
- Spring School 2026 – ‘Episignatures in Diagnostics of Rare Diseases’ by Camille Charbonnier
- Spring School 2026 – ‘Bioinformatic Tools for Diagnosing Rare Diseases’ by Christian Gilissen
- Spring School 2026 – ‘Non-coding Variants in Rare Diseases’ by Nicola Whiffin
- Spring School 2026 – ‘snRNA Genes in Neurodevelopmental Disorders’ by Christel Depienne
- Spring School 2026 – ‘Recommendations’ by Katja Lohmann and Ales Maver
- Spring School 2026 – ‘External Quality Assessment Scheme’ by Katja Lohmann and Ales Maver
- Spring School 2026 – ‘Quality Insurance’ by Katja Lohmann and Ales Maver
- Spring School 2026 – ‘NGS for Frontotemporal dementia’ by Laura Donker Kaat
Information for Patients
Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.
- Adult
- Video on Genetics and Inheritance
Patient Organisations
Clinical Studies and Trials
