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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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).