European Federations (EF) are strongly encouraged to participate in the annual Rare Disease Day www.rarediseaseday.org
At the advocacy level, the goal in Europe is to get Rare Diseases higher in the public health and research agendas, and to get more budget for Rare Diseases. This is especially timely since the 3rd EU Public Health Programme and 8th Research Framework Programme are been negotiated now for the period 2014-2020.
The theme in 2014 is Care.
The theme is very wide and general. Rare Disease Day participants could use it to bring forward issues that are important for the rare disease patient community, e.g. reimbursement, access to orphan drugs, healthcare pathways, multidisciplinary care, international research infrastructures, cross border healthcare, pooling of expertise, European reference networks, etc.
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