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International Conference on Rare Diseases and Orphan Drugs

Final Report Summary - ICORD (International Conference on Rare Diseases and Orphan Drugs)

Around 25 to 35 million people in the EU, or 5 to 8 % of the European population, are affected by diseases defined as so-called rare diseases. The European definition of 'rare' is an incidence of 5 out of 10 000 people. Research on rare diseases involves very small patient groups, thus international cooperation is of utmost importance. The ICORD project addressed the questions of how academic institutions, pharmaceutical companies, patient organisations and public authorities can cooperate within the EU, but also internationally and intercontinentally, to increase the development of treatments for rare diseases. In addition, ICORD 2005 created a forum for policy makers in healthcare and politics and patient organisations to share their views and experiences and to discuss their roles in the future development of orphan drugs.

Overall objectives
- To stimulate international cooperation and translation of scientific research in the rare diseases area, by promoting SME participation and networking activities between private and public partners;
- To arrange an international conference on rare diseases and orphan drugs at Karolinska Institutet in February 2005.

Specific objectives
- To focus on the cooperative possibilities rendered viable by the orphan drug legislation of the EU and the orphan drug act in the United States (US);
- To summarise the rare diseases / orphan drug research area at present and identify the crucial points where present work can be improved and the pace increased;
- To describe solutions from a few success stories in this field, related by both academic investigators and by pharmaceutical companies, and discuss what can be learned from these experiences for the future development of orphan drugs;
- To describe ways of funding rare diseases research and emphasise possibilities in cooperative efforts with the patient organisations in order to improve research on rare diseases and the development of orphan drugs.

The First International Conference on Rare Diseases and Orphan Drugs (ICORD) was held in Stockholm, 14-16 February 2005, in the presence of Her Majesty Queen Silvia. The conference venue was Grand Hotel, Stockholm. The founding partners of ICORD are the Sixth Framework Program of the European Union, the Office of Rare Diseases at the National Institutes of Health, and Karolinska Institutet, Stockholm, Sweden. In addition, a one-day Swedish satellite meeting on rare diseases and orphan drugs was organised at the Nobel Forum at Karolinska Institutet, 17 February 2005. The general aim of the ICORD conference (see online) was to discuss the diagnosis, prevention, and treatment of rare diseases, and to focus on the improved possibilities for the development of novel treatments for these conditions, following the orphan drug legislations in the US and the European Union. Speakers and participants from academia, pharmaceutical industry, funding and patient organisations, the European Commission, the National Institutes of Health, and other policymaking organisations were present, and the total attendance at the conference was 150.