National Plan for Rare Diseases
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منابع مشابه
Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases
BACKGROUND Calls have been made for governments to adopt a cohesive approach to rare diseases through the development of national plans. At present, Australia does not have a national plan for rare diseases. To progress such a plan an inaugural Australian Rare Diseases Symposium was held in Western Australia in April 2011. This paper describes the key issues identified by symposium attendees fo...
متن کاملThe German plan for rare diseases: a development in progress
In the year 2008, the German Federal Ministry of Health initiated a comprehensive study on the topic, “Activities for the improvement of health care for people with Rare Diseases”. The study was motivated by recommendations on Rare Diseases by the European Council of Health Ministers. One important aim of the Council is to develop strategies and plans to improve the situation for patients with ...
متن کاملEvolution of national and European policies in the field of rare diseases and their impact over the past five years
The 2009 Council Recommendation on an Action in the Field of Rare Diseases (2009/C 151/02) [1] encouraged Member States to elaborate a national plan or strategy for rare diseases before the end of 2013. One of the principal tasks of the European Union Committee of Experts on Rare Diseases (EUCERD) [2], through its Scientific Secretariat, was to analyse the results of the actions cited in the Re...
متن کاملNational plans: case study Belgium
In October 2011 the Belgian Fund for Rare Diseases and Orphan Drugs, a consortium of stakeholders supported by the King Baudouin Foundation, handed over the recommendations and proposed measures for a Belgian Plan for Rare Diseases. In follow-up of the EU recommendations to issue national plans by 2013, the Minister of Public Health and Social Affairs commissioned the Fund to propose a comprehe...
متن کاملRare diseases and orphan drugs: Latvian story
BACKGROUND Ten years have passed since Latvia became a Member State of the EU in 2004. As a result European regulations, including those related to rare diseases and orphan drugs, have been applied to Latvian legislative system. Orphan diseases have been recognized as a priority area for action in the public health system, though there are significant differences in the national healthcare serv...
متن کاملThe second French plan for rare diseases 2011-2014
Rare diseases are very complex and require comprehensive strategic planning. Because health and social services were not well adapted to the needs of those most vulnerable patients, a first National Plan for Rare Diseases has been implemented in France between 2009 and 2010, acknowledging the specificities of rare diseases. Information was developed for patients, professionals and the general p...
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