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2002-2003: Rare forms of dementia

Completed projects


The number of people suffering from rare forms of dementia is by definition low and consequently, very little has been done to provide information in the same way as it has been for other more common forms such as Alzheimer’s disease. However, when one adds up the number of people in the whole of Europe suffering from a rare form of dementia, there is a sizeable group of people who would benefit from information i.e. on the characteristics of a particular form of dementia, its progression, duration and treatment possibilities etc. Researchers and medical staff might also benefit from such information. This project would enable quality information on rare forms of dementia to be disseminated throughout Europe.

Funding and duration

The Rare Forms of Dementia project was funded by the European Commission under the programme “Action on Rare Diseases”

The project ran from August 2002 to August 2003.


The working group consisted of:

  • Jos VAN DER POEL, Stichting Alzheimer Nederland, Bunnik, The Netherlands
  • André DELACOURTE, INSERM, Lille, France
  • Clive EVERS, Alzheimer's Society, London, United Kingdom
  • Alexander KURZ, Psychiatrische Klinik der TU München, Munich, Germany
  • Kurt JELLINGER, Ludwig Boltzmann Institute of Clinical Neurobiology, Vienna, Austria
  • Giuliano BINETTI, Centro San Giovanni di Dio, Brescia, Italy


The aim of the project was to build up a database of information about rare forms of dementia and to make this available to the general public by means of our existing Internet and Intranet system. The information in the database would consist of disease-based entries and would include the disease name, synonyms, a description of the disorder, symptoms, causes, epidemiological data available, treatment, clinical trials, diagnostic procedures and a list of sources for further information. This information would be provided by the relevant experts and regularly brought up to date.


  • Expert meeting to define the precise content and structure of the database
  • Setting up of European network and collection of information; creation of framework for the future database
  • Writing up of text on each rare disease/circulation of texts and discussion via email discussion forum on existing Intranet system
  • Expert meeting to present and discuss texts and how to best present findings on Internet, difficulties and possible solutions
  • External validation of reports by independent specialists and subsequent amendments
  • Transferral of information onto Alzheimer Europe’s website and newly created database on rare diseases


The creation of a database on rare forms of dementia involves the creation of a network of European associations active in the field of dementia, the subsequent sharing of information and experience in this domain and the creation of an Internet system, an Intranet system and a database of information on dementia.



Last Updated: Tuesday 24 April 2012