Community Research and Development Information Service - CORDIS


ICORD — Result In Brief

Project ID: 12951
Country: Sweden

Cooperation across the board for rare diseases

Between 25 million and 35 million European citizens suffer from rare diseases, i.e. those with incidences of fewer than 5 in 10,000 people. Effective treatments call for cooperation throughout all levels of the health care chain.
Cooperation across the board for rare diseases
Recent EU legislation offers incentives for researchers and companies to work on developing treatments for rare diseases, the so-called orphan drugs. With research in this area centred on very small patient groups, international cooperation is a top priority. In addition, academic scientists and the pharmaceutical industry have much to gain from increased cooperation. Another important aspect is increasing awareness among policymakers in healthcare and politics, and also among the general public. This too will serve to improve related political and economical support

The 'International conference on rare diseases and orphan drugs' (ICORD) project investigated ways in which academic institutions, pharmaceutical companies, patient organisations and public authorities could enhance their cooperation so as to drive the development of treatments for rare diseases. The EU-funded project, through its initiative, established a forum for policymakers in healthcare and politics as well as for patient organisations to be able to exchange knowledge and experiences. A main goal was to have participants effectively discuss what role they could assume in the future development of orphan drugs.

The overall objectives were focused on stimulating international cooperation and translating scientific research in the rare diseases area. This was to be achieved by promoting small and medium-sized enterprises' (SMEs') participation and networking activities between public and private partners. Project partners also organised and held the First International Conference on Rare Diseases and Orphan Drugs (ICORD).

The general aim of the conference was to investigate the current situation in efforts to diagnose, prevent and treat rare diseases. A major focus was placed on opportunities created by various orphan drug legislations and how these could be used to boost work in the area of developing novel treatments for these conditions. Speakers and participants from the pharmaceutical industry, academia, the European Commission, National Institutes of Health, funding and patient organisations and other policymaking organisations attended the conference. Project outcomes opened the way to increasing professional and public awareness of this major health concern and very real problem.

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