On 11th November 2008, the European Commission adopted a Communication and a proposal for a Council Recommendation on rare diseases setting out an overall Community strategy to support Member States in diagnosing, treating and caring for the 36 million EU citizens with rare diseases. Please see below links to the Communication, the Council Recommendation, the Impact Assessment, and various media resources related to the launch of the Communication.


Council Recommendation:

Council Recommendation on an action in the field of rare diseases


Communication from the Commission

Communication on Rare Diseases: Europe's challenges


Impact Assessment

Executive Summary
Impact Assessment


Following from the European Parliament on the Council Recommendation
Opinion of the European Parliament

Following from the European Economic and Social Committee on the Council Recommendation
Opinion of the European Economic and Social Committee

Press releases

Commission calls for a European focus on rare diseases
Questions and Answers on the EU Approach to Tackling Rare Diseases


Citizen's summary
Citizen's summary


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:

• 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.
• 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.
• 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

• Public consultation regarding European Action in the Field of Rare Diseases (draft)

• Consultation contributions