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  Project funded in 2002: description and outcomesslide
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Area of activity
European information network on rare diseases
Training on rare diseases
Monitoring, surveillance, early warning for clusters of rare diseases

Title of Project

Establishing European neurofibromatosis lay group network. 
Health promotion, improving health information and knowledge for neurofibromatosis (NF) in Europe

Organization

Name:

NF EUROPE (EUROPEAN FEDERATION FOR NEUROFIBROMATOSIS ASSOCIATIONS)

Address:

Nijverheidsstraat 29/ lokaal 16
BE - 9100 SINT-NIKLAAS
BELGIUM

Telephone / Fax:

+32.3.76.61.341 / +32.3.76.64.516

Web site:

http://nfeurope.nfkontakt.org

E-mail:

nfeurope@nfkontakt.org
nfeurope@nfkontakt.be

Contact persons:

Lúcia Do Socorro COSTA DE LEMOS
President APNF
Project leader
Rua Marquesa d'Alorna, n° 2-atelier
P-2675 Ramada
Portugal
E-mail: lucia.lemos@clix.pt

Mia De SCHEIRDER - DESMET
President NF Europe
Office manager for the EC project
E-mail: mia@nfkontakt.be

 

Countries participating

Member States

 

Austria

X

Germany

X

The Netherlands

X

Belgium

 

Greece

X

Portugal

X

Denmark

 

Ireland

X

Spain

X

Finland

X

Italy

X

Sweden

X

France

 

Luxembourg

 

United Kingdom

EFTA / EEA Countries

 

Iceland

 

Liechtenstein

X

Norway

Candidate Countries

X

Bulgaria

 

Latvia

 

Slovakia

 

Cyprus

 

Lithuania

 

Slovenia

 

Czech Republic

 

Malta

 

Turkey

 

Estonia

 

Poland

 

 

 

Hungary

 

Romania

 

 

Others

X

Switzerland

 

  

  

 

  

  

  

  

  

  

Starting date and
duration of project

- 01/11/2002
- 24 months

Budget

Total cost: 188.506,24 €

Subsidy from the Commission: 131.954,37 €

Statement of the project's aims

1. To establish an European NF – network trough linking the existing neurofibromatosis lay groups and to strengthen the collaboration among them. To investigate and evaluate the needs of people affected and their families. To integrate new lay groups from EC and other European countries and provide know-how and information.

2. To develop a volunteer training program in order to help people affected for better socialization and enable them to cope with the disease.

3. To increase awareness about NF at a European level focusing on professionals, people concerned and the European society (organizing public awareness campaigns, designing a web page for disseminating contemporary information about NF).

4. To produce educational materials for people concerned (patients, social workers, teachers, and medical professionals.

5. Trough sharing experience to investigate the medical and social needs of people affected and to create recommendations and guidelines for evidence based managing the various aspects related to NF.
 

Outcomes of the project

Final report (91 KB)

Annexes of the final report: List (75 KB)

Annexes 1-4 (3.6 MB)
Annexes 5-9 (1 MB)
Annex 10.1 (1.7 MB)
Annex 10.2: may be obtained on request from the co-ordinator
Annex 10.3 (1.4 MB)
Annex 11: may be obtained on request from the co-ordinator
Annexes 12 (1 MB)
Annex 13.1 (1.3 MB)
Annex 13.2 (497 KB)
Annexes 14-22.2 (3 MB). Annexes 16.1 and 19: may be obtained on request from the co-ordinator
Annex 24: may be obtained on request from the co-ordinator
Annex 25: may be obtained on request from the co-ordinator

 
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