In this opinion, the EESC is calling on the Commission to launch a comprehensive European Action Plan on Rare Diseases (APRD) with SMART targets that can be achieved by 2030 to enable the diagnosis of rare disease patients within one year. Such plan should be accompanied by the allocation of appropriate budgetary resources and identify common and measurable goals to help define and implement national plans and strategies for RD, encourage Member States and continue cooperation at EU level.
In this opinion, the EESC is calling for a European flagship initiative for health, based on the principles of universality, quality, accessibility, solidarity and inclusivity. The strategic pillars of this roadmap are outlined, and a more institutionalised involvement of civil society in defining, evaluating and monitoring health priorities is asked.
The Commission is proposing an ambitious revision of the EU pharmaceutical legislation (including a Directive and a Regulation), in order to, inter alia, create a Single Market for medicines, ensure an innovation-friendly framework for research and production and reduce the administrative burden.
Download — Parere del CESE: Pharmaceutical package
Rare diseases are often chronic and sometimes disabling diseases affecting an estimated 25/30 million European citizens. Even more people are affected as care taker or family. Patients and relatives face difficulties in access to diagnosis, treatment or care and in their inclusion to society and labour market. In this opinion, the EESC presents its recommendations on how to improve social protection for these patients and raise awareness on their situation and needs.
Download — Parere del CESE: Ensuring strong European solidarity for rare disease patients
