Donnart Alain, Viollet Viviane, Roinet-Tournay Marie
Alliance Maladies Rares, Plateforme Maladies Rares, 96 rue Didot, 75014 Paris, France.
Soins Pediatr Pueric. 2013 Sep-Oct(274):17-9.
Under the influence of patients' associations, rare diseases have gradually become recognised as a public health issue. A first Rare Diseases National Plan, from 2005-2008, endeavoured to facilitate diagnosis and access to care. A second Plan, for 2011-2014, aims to improve patient management and develop research and international cooperation. The Rare Diseases Platform provides an essential resource for families and professionals.
在患者协会的影响下，罕见病已逐渐被视为一个公共卫生问题。2005年至2008年的首个国家罕见病计划致力于促进诊断和获得医疗服务。2011年至2014年的第二个计划旨在改善患者管理并开展研究与国际合作。罕见病平台为家庭和专业人员提供了重要资源。
