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Rare diseases patients face a lack of access to correct diagnosis, lack of information and public awareness, lack of scientific knowledge and expertise, lack of research, lack of therapeutic development, lack of appropriate healthcare, high cost for most of few existing drugs, inequalities in access to treatment and care, and lack of specialised social services. Because of their rarity these patients are a particularly vulnerable segment of the EU population which disserves a European widedoi:10.1108/ijccsm.2009.41401cab.002 fatcat:a5vxssijgbe2nbthc56d3n6vrq