Transposition and implementation of EU rare disease policy in Eastern Europe
(2017) In Expert Review of Pharmacoeconomics & Outcomes Research 17(6). p.557-566- Abstract
INTRODUCTION: А series of European Union (EU) political decisions have made rare diseases one of the cornerstones of the common European health policy. Adopted in 2009, Council Recommendation on an action in the field of rare diseases aimed to serve as a policy-making guideline. However, the implementation report, which followed it, neither performed detailed cross-country comparison, nor assessed the impact of the policies. Areas covered: A 10-indicator set was elaborated to structure the review and to describe rare disease activities in 14 Eastern European countries. Expert commentary: Taking into account all indicators, EU member states outperform candidate and potential candidate countries in terms of rare disease policy planning... (More)
INTRODUCTION: А series of European Union (EU) political decisions have made rare diseases one of the cornerstones of the common European health policy. Adopted in 2009, Council Recommendation on an action in the field of rare diseases aimed to serve as a policy-making guideline. However, the implementation report, which followed it, neither performed detailed cross-country comparison, nor assessed the impact of the policies. Areas covered: A 10-indicator set was elaborated to structure the review and to describe rare disease activities in 14 Eastern European countries. Expert commentary: Taking into account all indicators, EU member states outperform candidate and potential candidate countries in terms of rare disease policy planning and implementation. Hungary is the top performer, followed by Bulgaria and Czech Republic. Non-EU countries form the bottom tier, with Serbia being the best ranked among them. While EU adhesion is a major facilitator for planning and adopting rare disease policies, local stakeholders are the triggering factor for their successful implementation. European reference networks are likely to be the future of rare disease activities in the EU. They need to synchronize and closely collaborate with all important EU projects in the field of rare diseases if they are to achieve their objectives.
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- author
- Pejcic, Ana V ; Iskrov, Georgi ; Raycheva, Ralitsa ; Stefanov, Rumen and Jakovljevic, Mihajlo Michael
- publishing date
- 2017-12
- type
- Contribution to journal
- publication status
- published
- keywords
- Europe, Eastern, European Union, Guidelines as Topic, Health Policy, Humans, International Cooperation, Policy Making, Rare Diseases
- in
- Expert Review of Pharmacoeconomics & Outcomes Research
- volume
- 17
- issue
- 6
- pages
- 10 pages
- publisher
- Taylor & Francis
- external identifiers
-
- pmid:28975845
- scopus:85032990300
- ISSN
- 1473-7167
- DOI
- 10.1080/14737167.2017.1388741
- language
- English
- LU publication?
- no
- id
- c31b78bb-0902-410d-91c1-9adaad44d156
- date added to LUP
- 2018-09-01 22:30:13
- date last changed
- 2024-04-15 10:49:26
@article{c31b78bb-0902-410d-91c1-9adaad44d156,
abstract = {{<p>INTRODUCTION: А series of European Union (EU) political decisions have made rare diseases one of the cornerstones of the common European health policy. Adopted in 2009, Council Recommendation on an action in the field of rare diseases aimed to serve as a policy-making guideline. However, the implementation report, which followed it, neither performed detailed cross-country comparison, nor assessed the impact of the policies. Areas covered: A 10-indicator set was elaborated to structure the review and to describe rare disease activities in 14 Eastern European countries. Expert commentary: Taking into account all indicators, EU member states outperform candidate and potential candidate countries in terms of rare disease policy planning and implementation. Hungary is the top performer, followed by Bulgaria and Czech Republic. Non-EU countries form the bottom tier, with Serbia being the best ranked among them. While EU adhesion is a major facilitator for planning and adopting rare disease policies, local stakeholders are the triggering factor for their successful implementation. European reference networks are likely to be the future of rare disease activities in the EU. They need to synchronize and closely collaborate with all important EU projects in the field of rare diseases if they are to achieve their objectives.</p>}},
author = {{Pejcic, Ana V and Iskrov, Georgi and Raycheva, Ralitsa and Stefanov, Rumen and Jakovljevic, Mihajlo Michael}},
issn = {{1473-7167}},
keywords = {{Europe, Eastern; European Union; Guidelines as Topic; Health Policy; Humans; International Cooperation; Policy Making; Rare Diseases}},
language = {{eng}},
number = {{6}},
pages = {{557--566}},
publisher = {{Taylor & Francis}},
series = {{Expert Review of Pharmacoeconomics & Outcomes Research}},
title = {{Transposition and implementation of EU rare disease policy in Eastern Europe}},
url = {{http://dx.doi.org/10.1080/14737167.2017.1388741}},
doi = {{10.1080/14737167.2017.1388741}},
volume = {{17}},
year = {{2017}},
}