EUGLOREH project
THE STATUS OF HEALTH IN THE EUROPEAN UNION:
TOWARDS A HEALTHIER EUROPE

FULL REPORT

PART II - HEALTH CONDITIONS

5. HEALTH IMPACTS OF NON COMMUNICABLE DISEASES AND RELATED TIME-TRENDS

5.15. RARE DISEASES

5.15.5. Future developments

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5.15.5. Future developments

 

The EU and several MS have well identified the needs of patients affected with a RD and have defined policies to meet these needs. These initiatives should be continued as they have proved to be effective and correspond to the Lisbon strategy. The European model based on equity and solidarity is particularly suitable to the problems raised by RD.

 

Following the adoption of the Recommendation now under discussion at the European Council, rare diseases diagnosis and patient care in the EU are expected to change rapidly. Developing European collaboration for the delivery of health care and medical services in the field of rare diseases, including the set up of networks of centres of expertise - some of which have already been established - has major potential in bringing benefits to European citizens. It will overcome the limited experience of professionals confronted with very rare conditions; will improve access for EU citizens to treatment requiring a particular concentration/pooling of resources (infrastructure and knowledge) or expertise; will offer patients the highest possible chance of success through the sharing of expertise and resources; will maximise cost-effective use of resources by concentrating them where appropriate; will help to share knowledge and provide training for health professionals; will act as a benchmark to help develop and spread best practice throughout Europe; will help small countries with insufficient resources from their health care sector to provide a full range of highly specialised services of the highest quality.

 

Pressure for change in this direction comes from all stakeholders. However, in establishing and funding such cooperation, we must remember that health services and medical care are not in the European competency and any type of cooperation could have potential consequences on the national/regional health care systems.

 

The scope of European Collaboration may include the early research and development of therapeutic solutions; the establishment and maintenance of pooled resource centres to host databases and repositories of biological samples; the organisation of the health care system.

 

RD are model diseases for improving the level of empowerment of patients. RD patients and their organizations are among the most empowered groups of the health sector, mainly as a result of their own fight for recognition and for improved care. Patient organizations now play an active and instrumental role in determining RD research policies and projects. Patients are directly involved in shaping their future, and are setting an example of how to proceed with other deprived and excluded groups.

 

The rise of attention for rare diseases is also witnessed by a recent initiative: Eurordis in partnership with National Rare Diseases Alliances have organised on 29 February 2008 the First European Rare Diseases Day. The event (which will be repeated on 28.02.09) was also supported through the creation of a new website aiming also at reporting all national initiatives on rare diseases.

(see: http://www.eurordis.org/article.php3?id_article=1593 and http://www.rarediseasesday.org).