Transposition and implementation of EU rare disease policy in Eastern Europe

Abstract

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.

A compilation of national plans, policies and government actions for rare diseases in 23 countries

“…Previously, we mentioned studies highlighting the coherent approach of the EU to rare diseases (16,19,20), including countries from Eastern Europe (42). Other studies have focused on the comparison of specific laws among multiple countries and regions; for example, laws related to facilitating treatments with orphan drugs (1) or laws seeking to address the multiple needs of patients with rare diseases (25).…”

Редките Тумори – Епидемиологични И Общественоздравни Аспекти

“…Обособяването на редките болести като самостоятелен, отделен здравен приоритет през последните 15 години у нас и в ЕС несъмнено подобри грижите за тези пациенти и техните семейства. Епидемиологични и клинични проучвания демонстрират значително удължена продължителност и повишено качество на живот при голям брой редки нозологични единици за този период [18].…”

Rare diseases in Romania – a response to ‘transposition and implementation of EU rare diseases policy in Eastern Europe’

“…Romanian National Committee for Rare Diseases, Ministry of Health, Romania Few days ago, searching the internet for particular information about the upcoming event (Rare Disease Day -February 28), a catchy title got me curious and made me want to read the article. I am speaking about the article entitled 'Transposition and Implementation of EU rare disease policy in Eastern Europe' published by your journal, volume 17, 2017issue 6, pages 557-566 [1]. The article contains incorrect and misleading information about Romanian National Plan/Strategy on Rare Diseases.…”