Area of activity
Training on rare diseases

Title of Project

TEAM 2 - Ongoing transfer of expertise on prevention, diagnosis and treatment of common complications in adults with rare metabolic diseases (Phase 2)

Organization

Name:

Department of Internal Medicine - UMC (University Medical Center) Utrecht

Address:

Heidelberglaan 100

NL - 3584 CX - UTRECHT

Telephone / Fax:

+ 31.30.250.63.12 / +31.30.251.83.28

Web site:

www.umcutrecht.nl

E-mail:

Contact person:

Harold Wessel DE VALK
Project leader
Tel / Fax: +31.30.250.43.98
E-mail: H.W.deValk@azu.nl
Web site: http://www.umcutrecht.nl/afdeling/index.asp?dep=9

Countries participating

Member States

Austria

X

Germany

X

The Netherlands

Belgium

Greece

Portugal

Denmark

Ireland

Spain

Finland

X

Italy

X

Sweden

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

X

Hungary

Romania

Others

Armenia

Croatia

Starting date and
duration of project

- 15/12/2002
- 24 months

Budget

Total cost: 208.004,36 €

Subsidy from the Commission: 145.603,05 €

To improve and disseminate expert knowledge on medical issues in an emerging group of patients: adult patients with rare diseases. The issues are common to many of these diseases, allowing discussion and evaluation on diagnosis and treatment transcending the limits of a single disease. The topics are pregnancy, bone disease, ophthalmologic disease, neurological complications, new treatment strategies, and extended neonatal screening programmes. Expert knowledge is improved by quality-assessment of currently fragments expertise by expert-groups leading to a broad consensus. Dissemination of the new expertise occurs through training sessions based on the consensus. The review and training sessions are designed and held by European professionals.

The new knowledge and trainings will also be distributed as hard copy, CDRom and through the Internet, ensuring adequate dissemination and access for all professionals in Europe. In addition, an electronic response facility will be set up, answering questions posed by professionals, enabling direct and rapid interaction with discussion of detailed and practical information.