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Public Consultation regarding a European Action in the Field of Rare
Diseases
The European Commission plans to publish in November 2008 a Communication on
a European Action in the Field of Rare Diseases. This communication will be the
culmination of a process starting with the current consultation aiming at
gathering expertise in all Member States.
High-quality diagnosis, treatment and information for people suffering from
rare diseases are priority issues for the European Commission as established in
the new Health Strategy adopted last 23 October 2007. Rights to an equal
healthcare are also recognised in the Charter of Fundamental Rights of the EU.
The Commission therefore undertook in its 2007 Annual Policy Strategy to
develop a Community action in favour of rare diseases patients by reinforcing
cooperation between Member States and by providing support to European
information networks and patient's organisation actions.
The Commission considers that Community action should be founded on three
pillars:
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Strengthening the cooperation between EU programmes : the
EU Public Health Programmes, the Framework Programmes for Research and
Technological Development, the Orphan Drugs strategy, the future Health
Services Directive, and any other existing or future EU or national
action.
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Encouraging EU Member States in developing national health
policies to ensure equal access and availability of prevention,
diagnosis, treatment and rehabilitation for people with Rare Disease.
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Ensuring that common policy guidelines are developed and
shared everywhere in Europe: specific actions – in areas such as
research, centres of expertise, access to information, incentives for the
development of orphan drugs, screening, etc. – shall be part of an overall
minimum common strategy on Rare Diseases.
Consultation regarding Community action on rare
diseases
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