Taruscio D, Gentile A E, De Santis M, Ferrelli R M, Posada de la Paz M, Hens M, Huizer J, Fregonese L, Stefanov R, Bottarelli V, Weinman A, Le Cam Y, Gavhed D, Mincarone P, Bushby K, Frazzica R G, Donati C, Vittozzi L, Jessop E
National Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy.
Public Health Genomics. 2013;16(6):278-87. doi: 10.1159/000355932. Epub 2014 Feb 3.
BACKGROUND/AIMS: National Plans for Rare Diseases (RDs) are the common denominator of current public health policy concerns on RDs across the EU. With the aim of a better distribution of the available resources, they conjugate the European objective that aims at ensuring that patients with RDs have access to high-quality care - including diagnostics, treatment and rehabilitation - with the national priorities of selecting specific measures for adoption and implementation.
The European Project for Rare Diseases National Plans Development (EUROPLAN, www.europlanproject.eu) is cofunded by the EU Commission (DG-SANCO) and is coordinated by the Italian National Center for Rare Diseases of the Istituto Superiore di Sanità (ISS). The EUROPLAN goal is to promote the implementation of National Plans or Strategies to tackle RDs and share relevant experiences within countries, linking national efforts, through a common strategy at a European level. In order to fulfill these objectives, EUROPLAN involved health authorities, clinicians, scientists, the European Organisation for Rare Diseases (EURORDIS), and many other patient groups as associated and collaborating partners from several European countries.
The project was launched in 2008 and foresaw 2 implementation phases: phase 1 (2008-2011) to build the consensus definition of operational tools (recommendations and indicators), and the ongoing phase 2 (2012-2015), mainly aimed at capacity building with the proactive involvement of multilevel stakeholders. EUROPLAN is facilitating and accelerating the implementation of National Plans in almost all EU and several non-EU Countries.
EUROPLAN is a European and an international process more than a project, and it could be defined as a 'litmus test' demonstrating how the collaboration between institutions and patients' associations can accelerate the process of awareness and development of policies and actions.
背景/目标：国家罕见病计划是当前欧盟公共卫生政策中对罕见病关注的共同主题。为了更好地分配现有资源，这些计划将旨在确保罕见病患者能够获得高质量医疗服务（包括诊断、治疗和康复）的欧洲目标，与各国选择具体措施加以采用和实施的国家优先事项结合起来。
该项目于2008年启动，预计有两个实施阶段：第一阶段（2008 - 2011年）建立操作工具（建议和指标）的共识定义，正在进行的第二阶段（2012 - 2015年）主要旨在通过多级利益相关者的积极参与进行能力建设。EUROPLAN正在促进和加速几乎所有欧盟国家以及几个非欧盟国家实施国家计划。
EUROPLAN与其说是一个项目，不如说是一个欧洲和国际进程，它可以被定义为一个“试金石”，展示了机构与患者协会之间的合作如何能够加速政策和行动的认知及发展进程。
