From difficulties to solutions for the rare disease community

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. Participants will also discuss national and EU measures to tackle and address rare diseases, as well as research and funding.

Contributions

European activities on rare diseases
Speech by Mr. Fernand Sauer, Director for Public Health, European Commission

Reports on rare diseases. These projects were supported by the EU rare diseases programme, carried out in the framework of the public health activity of 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.