National plans or strategies for rare diseases

The Council adopted in June 2009 the Recommendation on an action in the field of rare diseasespdfbgcsdadeelenesetfifrhuitltlvmtnlptplroskslsv.

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 2008pdf


National Plans or strategies on Rare Diseases adopted by the Member States

Austria

Ministry of Health Report on Rare Diseases in Austria (2012) (in German)pdf

Belgium

Recommandations et propositions de mesures en vue du Plan belge pour les Maladies Rares (2010) (in French)pdf
Recommendations and proposals for the Belgian National Plan for Rare Diseases (2010) (in English)pdf
Plan belge pour les Maladies Rares 2013 (in French)pdf

Bulgaria

National Plan on Rare Diseases 2009-2013 (unofficial English version)pdf 
National Plan on Rare Diseases 2009-2013 (in Bulgarian) (in Bulgarian)

Croatia

National Plan for Rare Diseases (in Croatian)msw8

Cyprus

Cyprus Strategic Plan for Rare Diseases (2012) (in Greek)pdf

Czech Republic

Czech National Strategy for Rare Diseases 2010-2020 (in Czech)pdf
Czech National Strategy for Rare Diseases 2010-2020 (in English)pdf
Czech National Plan for Rare Diseases 2012-2014 (in Czech)pdf
Czech National Plan for Rare Diseases 2012-2014 (in English)pdf

France

Plan National Maladies Rares (2005-2008) (in French)pdf
French National Plan on Rare Diseases (2005-2008) (in English)pdf
Plan National des Maladies Rares (2010-2014) (in French)pdf

Germany

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)pdf
Nationaler Aktionsplan für Menschen mit Seltenen Erkrankungen (German National Plan of Action for People with Rare Diseases 2013) (in German)pdf
German National Plan of Action for People with Rare Diseases 2013 (in English)pdf

Greece

Greek National Plan on Rare Diseases 2008-2012 (in Greek)pdf 

Hungary

National Plan for Rare Diseases. Healthcare policy strategy for rare diseases until 2020pdf(492 KB)

Ireland

Consultation on the first National Rare Disease Plan for Ireland

Italy

Italian National Plan for rare diseases consultation launched
Italian National Plan for Rare Diseases 2013-2016 (Draft) (in Italian)pdf

Latvia

The Plan on Rare Diseases 2013 to 2015 (in Latvian)pdf

Lithuania

Dėl Nacionalinio veiklos, susijusios su retomis ligomis (National plan on activities related to rare diseases) (in Lithuanian)

Luxembourg

Les maladies rares: Enquête sur la situation des personnes atteintes de maladies rares au Grand-Duché de Luxembourg 2011pdf

Portugal

Programa Nacional para Doenças Raras / National Programme for Rare Diseases 2008-2015 (in Portuguese only)pdf(81 KB) 

Romania

Romanian National Plan for Rare Diseases 2010-2014 (Draft) (in Romanian)pdf
Romanian National Plan for Rare Diseases 2010-2014 (Draft) (in English)pdf

Slovak Republic

Slovak National Strategy for the Development of Health Care for Patients with Rare Diseases 2012-2013 slovak (sk) pdf
Slovak National Strategy for the Development of Health Care for Patients with Rare Diseases 2012-2013 english (en) pdf

Slovenia

Work Plan for the Field of Rare Diseases in the Republic of Slovenia (in Slovene)pdf 
Work Plan for the Field of Rare Diseases in the Republic of Slovenia (in English)msw8

Spain

Estrategia en Enfermedades Raras del Sistema Nacional de Salud / Rare Diseases Strategy of the National Health System (in Spanish) pdf
Estrategia en Enfermedades Raras del Sistema Nacional de Salud / Rare Diseases Strategy of the National Health System (in English)pdf

The Netherlands 

Strategy of The Netherlands in the field of Rare Diseases (draft) (in English)pdf
Concept Nationaal Plan Zeldzame Ziekten netherlands (in Dutch)pdf
Nationaal Plan Zeldzame Ziekten - Official site with information concerning the elaboration of a National Plan for RD in the Netherlands (in Dutch)

United Kingdom

UK Plan for rare diseases consultation launched
UK Strategy for Rare Diseases 2013pdf