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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

Title of Project

Pan-European network for patients information on rare diseases and orphan drugs (PARD 3)

Organization

Name:

EURORDIS (EUROPEAN ORGANISATION FOR RARE DISORDERS)

Address:

Hôpital Broussais, 
102, rue Didot,
F-75014 - PARIS

Telephone / Fax:

+ 33.1.56.53.52.10 / + 33.1.56.53.52.15

Web site:

www.eurordis.org

E-mail:

eurordis@eurordis.org

Contact person:

Claire Marichal
Project coordinator
Tel: + 33.1.56.53.52.11
e-mail: claire.marichal@eurordis.org

Yann LE CAM
Chief executive officer
Tel: +33.1.56.53.52.16
e-mail: yann.lecam@eurordis.org

Countries participating

Member States

 

Austria

X

Germany

X

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

X

Iceland

 

Liechtenstein

 

Norway

Candidate Countries

 

Bulgaria

 

Latvia

 

Slovakia

 

Cyprus

 

Lithuania

 

Slovenia

 

Czech Republic

 

Malta

 

Turkey

X

Estonia

 

Poland

 

 

X

Hungary

 

Romania

 

 

Others

 

 

 

 

 

 

 

 

 

 

 

 

Starting date and
duration of project

- 30/12/2002
- 15 months

Budget

Total cost: 268.234,46 €

Subsidy from the Commission: 187.764,12 €

Statement of the project's aims

The projects primarily aims at :

• Improving patients' access to information on rare diseases and the availability of Orphan Medicinal Products, by identifying and benchmarking national and EU best-practices for information on rare diseases and orphan medicinal products
• Developing practical means and recommendations for the improvement of information and its access for professionals and patients

Through these overall objectives, the projects also aims at
• Strengthening trans-national collaboration and network between rare diseases patient organisations
• Strengthening recently created national alliances of patient organisations and developing contacts to create new ones in current and future Member States
• Transferring know-how and support to patient organisations in accession Countries
• Further building consensus and common understanding on key issues addressed by the EU policy on rare diseases and orphan drugs

1 bis) project specific aims:

1. Survey and evaluation on how the national alliances, European disease specific federations and national help-lines are providing health information on rare diseases to patients and how they are collecting data which could be used to elaborate public health policy in the field of rare diseases, orphan drugs and new therapies. This will involve a survey based on 500 questionnaires (roughly representing 1/3 estimated number of rare disorders patient organisations across Europe) sent to national patient organisations and European diseases specific federations and on in-depth interviews in 10 countries (B, Dk, Fr, D, It, NL, P, Es, Sw, UK).

2. Based on this review, identify and analyse the best practices existing and develop a benchmarking able to be well accepted by all the partners involved in the Network.

3. Based on this work, develop consensual guidelines on best practices around information and disseminate them to the national alliances, help lines and other parties interested in improving their own information system.

4. Based on the same work, develop basic guidelines on how to create and manage national help lines in the European Union and in the Future Member States as well as the specific case of creating or managing information services within a rare diseases national alliance.

5. Develop a Support and Training Methodology and Package as a model project to help local partners to gain from others best practices and experience.

6. Assist each Partner based in the Member States in defining an Improvement Action Plan on Information to patients on Orphan Drugs and Rare Diseases. Those Action Plans can also serve as a reference point to the Future Member States to stimulate their own development.

7. Identify needs/gaps for future European integrated projects to set the base for further development of the Pan-European Patient Network on Rare Diseases and Orphan Drugs. Focus will be on Rare Diseases as a pioneering example of specific community added value contributing to an EU health information system.

8. Use and implement the Web Site prototype built through PARD2 as one method of networking and sharing of information at each step and promoting all the above specific aims.

9. Co-ordinate and contribute to the organisation of the 1st European Awareness Week for Rare Diseases. Project partners based on UK experience, will identify the common theme, the period, mobilise their respective network; develop action plan and funding strategy for this pan-European event; co-ordinate the preparation and review the achievements.

10. Publish and disseminate throughout Europe a guide on producing and assessing quality of information to patients on rare diseases and orphan drugs.
 

Outcomes of the project

Executive summary of the final report ( 118 KB)

Final report, June 2004 ( 755 KB)

Annexes of the final report:

Annex 1: Qualitative Interviews: list of interviews and template of qualitative interview reports (209 KB)
Annex 2: Quantitative Survey: accompanying letter + final questionnaire (English) (337 KB)
Annex 3: Quantitative and qualitative survey: highlights (195 KB)
Annex 4: Guidelines (233 KB)
Annex 5: Manual (1.4 MB)
Annex 6: Training package for pilot session in Estonia (3.3 MB)
Annex 7: National Workshop Synthesis (93 KB)
Annex 8: Cooperation agreements with ENERCA, NEPHIRD, EUROCAT and amendment to cooperation agreement with ORPHANET (177 KB)

 

 
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