EESC opinion: European action - rare diseases

Key points

The Committee:

  • welcomes the proposal for a Council Recommendation, and endorses the harmonised EU approach to identifying, defining and classifying rare diseases;
  • recommends making national strategies on rare diseases an integral part of national public health programmes and supports the idea of drawing up national plans, but fears that 2011 is too early for the plans to be prepared in the requisite detail; all Member States should establish their own centres for rare diseases, able to play a part in coordinating research and medical institutions, healthcare providers and governments and deal with tasks relating to data compilation, accreditation and methodology;
  • recommends that coordination and information flows be established across Europe, and that shared and standardised technical terminology be developed. A special communication and reporting system should be developed so as to enable give all concerned access to the information they need;
  • endorses the support given to coordinated research currently being carried out into rare diseases and the steps to promote both this research and coordination projects aimed at making the best use of limited funding, together with a move towards closer international cooperation; long-term sources of funding should be developed rather than using project-based funding.
  • The EESC recommends looking into the involvement of patients' associations, professional organisations, other civil society organisations and the social partners here, and analysing and evaluating scope for using reference centres located in other Member States.
  • The EESC supports the creation of an EU Advisory Committee on Rare Diseases (EUACRD), and recommends that, in addition to representatives of the Member States, the healthcare industry, patients' organisations and experts, the social partners and other organisations of the civil society, should be involved.
  • The initiative of the European Day of rare diseases should be supported, with a view to it becoming an international event.
  • The EESC agrees that a report on implementation should be compiled five years after adoption of the recommendation, but insists that the requisite changes be made during implementation, taking patients' rights into account. The EESC would like to be involved in the continuous evaluation of such implementation.