- Current languageen
National plans or strategies for rare diseases
The Council adopted in June 2009 the Recommendation on an action in the field of rare diseases.
The Recommendation supports adoption of national plans and strategies for responding to rare diseases (RD) before 2013.
The Council recommends that Member States should:
- Establish and implement plans or strategies for rare diseases or explore measures for rare diseases in other public health strategies, to ensure that patients have access to high quality care, including diagnostics, treatments, habilitation for those living with the disease and, if possible, effective orphan drugs.
In particular, the Member States should:
(a) elaborate and adopt a plan or strategy by the end of 2013 at the latest to guide and structure actions in rare diseases within their health and social systems;
(b) integrate initiatives at local, regional and national levels into their plans or strategies for a comprehensive approach;
(c) define a number of priority actions with objectives and follow-up mechanisms;
(d) take note of the development of guidelines and recommendations of the EUROPLAN project (European Project for Rare Diseases National Plans Development), funded under the Community public health programme 2003-2008.
The European Project for Rare Diseases National Plans Development (EUROPLAN)
The Project is lead by the Istituto Superiore di Sanità (IT). Despite the progress made over the last years in the field of rare diseases, a comprehensive and evidence based approach is still missing in many EU Member States. This leads to an incomplete and often inadequate framework to address RD. The project aims to develop erecommendations on how to define strategic plans for RD.
Such recommendations will include best practices to address RD and information on the different steps to develop a plan. This will support harmonisation of public health strategies on RD throughout Europe.
See European Project for Rare Diseases National Plans Development (EUROPLAN) web site
See Summary of the EUROPLAN Conference 'National Strategies & Action for Rare Diseases in Europe' under French Presidency of the Council - December 2008
National Plans or strategies on Rare Diseases adopted by the Member States
Recommandations et propositions de mesures en vue du Plan belge pour les Maladies Rares (2010) (in French)
National Plan on Rare Diseases 2009-2013 (unofficial English version)
Maßnahmen zur Verbesserung der gesundheitlichen Situation von Menschen mit Seltenen Erkrankungen in Deutschland (Measures to improve the health situation of persons with rare diseases in Germany) (in German)