Ritka Betegségek Nemzeti Terve

Translated title of the contribution: Hungarian national plan and strategy for rare diseases

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

The rarity of low prevalence diseases and the lack of information, research, diagnosis, treatment and expert availability may mean that the people affected do not benefit from the health resources and services they need. Rare diseases are considered to have little impact on society as a whole, yet they pose serious difficulties for sufferers and their families. By the end of the last century, two robust achievements in science and technology, i.e. the biotechnological and informatics revolutions, have created a real base for global approach to rare diseases by coordinating the capacities for health care, biomedical research and drug development and pooling the very limited resources available both nationally and transnationally. The European Commission has taken a number of actions which help patients and professionals to share expertise and information across borders with the objective of reducing the number of people suffering from these types of diseases. These actions together form the legal basis of the European Union policy on rare diseases. Orphan or rare diseases are now one of the priorities in the public health programmes in European Union. In 2009, the document "European Union Council Recommendation on an action in the field of rare diseases" was released with the main goal to provide national health authorities with supporting tools for the development and implementation of national plans and strategies for rare diseases by the end of 2013. This recommendation adopted by European Union Member States, allows common policy guidelines to be shared everywhere in Europe. By September 2013 the Hungarian National Plan for Rare Diseases, a health policy strategy until 2020 was finalized. The present report gives a short view on the document.

Original languageHungarian
Pages (from-to)325-328
Number of pages4
JournalOrvosi Hetilap
Volume155
Issue number9
DOIs
Publication statusPublished - Mar 1 2014

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Rare Diseases
European Union
Informatics
Health Resources
Health Services Needs and Demand
Health Services Research
Health Policy
Research
Biomedical Research
Public Health
Guidelines
Technology
Health
Pharmaceutical Preparations

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Ritka Betegségek Nemzeti Terve. / Kosztolányi, G.

In: Orvosi Hetilap, Vol. 155, No. 9, 01.03.2014, p. 325-328.

Research output: Contribution to journalArticle

Kosztolányi, G. / Ritka Betegségek Nemzeti Terve. In: Orvosi Hetilap. 2014 ; Vol. 155, No. 9. pp. 325-328.
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