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Project funded in 2002: description and outcomes

Area of activity
European information network on rare diseases

Title of Project

Rare Forms of Dementia

Organization

Name:

ALZHEIMER EUROPE

Address:

Route de Thionville - 145

L - 2611 LUXEMBOURG

Telephone / Fax:

352 0 297970 / 352 0 297972

Web site:

http://www.alzheimer-europe.org

E-mail:

info@alzheimer-europe.org

Contact person:

Jean GEORGES
Executive Director
e-mail: jean.georges@alzheimer-europe.org

Sandrine LAVALLE
Project coordinator
Tel: +352.29.79.70

Countries participating

Member States

X

Austria

X

Germany

X

The Netherlands

 

Belgium

 

Greece

 

Portugal

 

Denmark

 

Ireland

 

Spain

 

Finland

 

Italy

 

Sweden

X

France

X

Luxembourg

X

United Kingdom

EFTA / EEA Countries

 

Iceland

 

Liechtenstein

 

Norway

Candidate Countries

 

Bulgaria

 

Latvia

 

Slovakia

 

Cyprus

 

Lithuania

 

Slovenia

 

Czech Republic

 

Malta

 

Turkey

 

Estonia

 

Poland

 

 

 

Hungary

X

Romania

 

 

Others

 

 

 

 

 

 

 

 

 

 

 

 

Starting date and 
duration of project

- 01/08/2002
- 12 months

Budget

Total cost: 118.800,00 €

Subsidy from the Commission: 83.160,00 €

Statement of the project's aims

The aim of the project is 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, synonym, 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.
 

Outcomes of the project

Final report, October 2003 (390 KB)

Annexes of the final report:

Annex 1: List of participants (156 KB)
Annex 2: Agenda and minutes of the 2 Experts' meetings:

1st meeting held on 18-19 January 2003 in Luxembourg:
Annex 2.1: Agenda (200 KB)
Annex 2.2: Minutes (809 KB)

2nd meeting held on 17-18 May 2003 in Luxembourg:
Annex 2.3: Agenda (136 KB)
Annex 2.4: Minutes (297 KB)

Annex 3: Information obtained on Internet (1.2 MB)
Annex 4: Classification system (178 KB)

Final documents on Rare Forms of Dementia:

General introduction (529 KB)

Description of the diseases (1.7 MB)

Glossary (202 KB)