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New Key players against Rare Diseases presented at the F.C. Barcelona’s stadium

70 institutions join efforts in three coordinated European Projects funded with 38 million Euro

January 24th 2013

Press meeting at the FC Barcelona's stadium

A multi-million Euro initiative is bringing together researchers from across the world to develop new diagnostic tools and new treatments for people with rare diseases and to connect research data in this area on a global scale. Rare diseases – while individually uncommon – affect one person in every 17 and 80% have a genetic component. Today, the EU has announced 38 million Euro funding for research towards new treatments and for the development of a central global rare disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects. Dr. Joan Lluis Vives-Corrons, a physician from IDIBAPS-Hospital Clínic and coordinator of ENERCA, is an associated partner of one of those projects.

The presentation of the new funding in the fight against rare diseases was celebrated in the Camp Nou, the F.C. Barcelona’s stadium, in an event hosted by the Centre nacional d'anàlisi genòmica (CNAG). The new key players in the fight against rare diseases are EURenOmics (www.eurenomics.eu), focused on rare kidney disorders, Neuromics (www.rd-neuromics.eu), which addresses rare neurodegenerative and neuromuscular disorders, and RD-Connect (www.rd-connect.eu), that will develop a global infrastructure for sharing the research outputs of these and other rare disease projects.

The event counted with the participation of EURORDIS and IRDiRC, meaning that this initiative is the largest coordinated effort ever made against rare diseases. The genetic and epigenetic studies, using next generation techniques such as whole-exome sequencing (WES), will hopefully lead to faster diagnosis and better treatments and improve the quality of life for patients with rare diseases.

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