European Rare dIsease research Coordination and support Action
Rare diseases are defined as diseases that affect not more than 1 person per 2000 in the European population. While individual rare diseases affect only a small percentage of the population, they collectively affect up to 30 milli...
Rare diseases are defined as diseases that affect not more than 1 person per 2000 in the European population. While individual rare diseases affect only a small percentage of the population, they collectively affect up to 30 million people in the EU. To facilitate access to high quality cross-border healthcare and promote and foster cooperation on rare disease healthcare between member states, 24 European Reference Networks (ERN) are currently active. The aim of the ERICA consortium, in which all 24 ERNs take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERN’s research and innovation capacity. Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum ERICA strives to reach the following goals: • new intra- and inter-ERN rare disease competitive networks; • effective data collection strategies; • better patient involvement; • enhanced quality and impact of clinical trials; • increased awareness of ERN’s innovation potential; Through integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and innovation ERICA will strengthen the research and innovation capacity of the ERNs. This will result in safe, accessible and efficient access of therapies for the benefit of patients suffering from rare diseases and conditions.ver más
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