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Public Health (20-06-2005)

European Conference on Rare Diseases

The European Conference on Rare Disease is taking place in Luxembourg on 21-22 June. Organised by the European Organisation for Rare Diseases (Eurordis) and supported by the Commission and the Luxembourg Presidency of the Council of Ministers, the conference will be attended by a wide spectrum of stakeholders, from patients and health professionals to policy experts and industry representatives.

The programme for the 2-day meeting will address current problems that people living with rare diseases face, and will look at possible solutions. Among the broad topics to be discussed in various sessions at the conference are:
  • Delays in diagnosis, discrimination and insufficient compensation;
  • Benchmarking initiatives to improve care;
  • Building cooperation between stakeholders to improve research – targeting research to improve quality of life.
  • Accessing appropriate care, organisation of care, best practice guidelines for care management
  • Fighting the fragmentation of research
  • Treating with Orphan drugs
  • Moving forward in Europe
Participants will also discuss national and EU measures to tackle and address rare diseases, as well as research and funding.

A number of recently published reports on rare diseases will also be distributed during the conference. These projects were supported by the EU rare diseases programme, carried out in the framework of the public health activity of the EU. They include:
  • The final activity report of European Surveillance of Congenital Anomalies (Eurocat)
  • The final report of the European Network for Congenital Anaemias (ENERCA)
  • The scientific results of Orphanet, the database of rare diseases and orphan drugs for the general public
  • Activity Report of the European Network on the Epidemiology, Pathophysiology and Treatment of Severe Chronic Neutropenia
  • Alzheimer Europe report on Rare Forms of Dementia
What are considered to be rare diseases?

Rare diseases, including those of genetic origin, are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as prevalence of less than 5 per 10,000 in the EU.

EU action on rare diseases

The EU action programme on rare diseases for 1999-2003 was established with the aim of contributing towards ensuring a high level of health protection for EU citizens in relation to rare diseases. Under this action programme, specific attention was given to improving knowledge and facilitating access to information on these diseases.

Rare diseases are now one of the priorities in the EU Public Health Programme 2003-2008, and a number of projects are being funded to improve information exchange and support co-ordination at EU level to encourage continuity of work and trans-national cooperation when dealing with rare diseases.

For more information on the European Conference on Rare Diseases, see:
For more information on EU policy on Rare Diseases, see: