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

Title of Project

ENERCA - European Network for Rare Congenital Anaemias

Organization

Name:

Unidad de Eritropatologia Hospital Clinic i Provincial de Barcelona

Address:

Villaroel - 170

ES - 08036 BARCELONA

Telephone / Fax:

+34.93.227.5400 / +34.93.227.5454

Web site:

http://www.ub.es/medicina

E-mail:

enerca@medicina.ub.es

Contact persons:

Joan Lluis VIVES CORRONS
Project leader
Fundació Privada del Clinic per a la Recerca Biomèdica
Tel: +34.93.227.5451
Fax: +34.93.451.5789
E-mail: jlvives@medicina.ub.es
Web site: http://www.enerca.org

Sara HURST
Project coordinator
Fundació Privada del Clinic per a la Recerca Biomèdica
Tel: +34.93.451.5950
Fax: +34.93.451.5789

E-mail: enerca@enerca.org
Web site: http://www.enerca.org

Countries participating

Member States

 

Austria

X

Germany

 

The Netherlands

X

Belgium

 

Greece

X

Portugal

X

Denmark

 

Ireland

X

Spain

 

Finland

X

Italy

X

Sweden

X

France

 

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

 

Romania

 

 

Others

 

 

 

 

 

 

 

 

 

 

 

 

Starting date and 
duration of project

- 15/10/2002
- 18 months

Budget

Total cost: 280.195,68 €

Subsidy from the Commission: 195.042,40 €

Statement of the project's aims

1. To set up a website with database for European health professionals in the field to include those entries listed in annex 7 of the “integrated work plan 2002” and to keep the information current.

2. To facilitate clinicians in primary, secondary and tertiary care in rapidly identifying appropriate diagnostic and treatment centres/clinicians with particular expertise in specific rare congenital anaemias when referral or advice is needed.

3. To facilitate patient access to information about their condition by providing an easy to understand information pamphlet in their language. This would be available on-line from the website for doctors to download for patients and their relatives.

4. A personal Medical Alert Card (MAC) will also be provided for patients to carry with them containing their name, condition, current medication, their doctor's telephone number, the website address and an emergency contact telephone number.

5. To make advances in the understanding of genetic mechanisms in congenital anaemias to improve early detection. Our project will create a core of expertise within the community and rapidly disseminate its findings by means of a web-based database.

6. To promote the surveillance of congenital anaemias by studying epidemiological data for countries and local geographical areas.

7. The final aim is to offer a much-improved service for patients in every aspect, from reducing detection time to providing a reliable service that will be standardised across the European Community.
 

Outcomes of the project

Final report, July 2004 (294 KB)

Annexes of the final report (365 KB)
 

 
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