The Eastern European countries are republics in transition. Although some of them are just accepted as members of the EU, at this stage it is difficult for their local governments to spend money on healthcare and research on rare diseases and orphan drugs. Today, the topic of patients with rare diseases, their human rights to receive information and contemporary medical service are still insufficiently discussed in these communities. So, it emerged the need of organizing a conference that will have the crucial role to raise the governmental and public awareness in Eastern Europe on rare diseases and orphan drugs.
European national policy-makers broadly agree on the core objectives that their health care systems should pursue. The list is strikingly straightforward: universal access for all citizens, effective care for better health outcomes, efficient use of resources, high-quality services and responsiveness to patient concerns. The transition economies of Eastern Europe confront the same challenge as established market economies in health financing: how to mobilize and allocate resources equitably and efficiently to satisfy a growing need and demand for health services. The health-sector reforms have included reducing direct state involvement (including decentralization, privatization and organizational reform) and looking for alternative sources of funding with wider participation of the non-governmental sector.
Non-governmental organisations (NGOs) play an important role in reaching and mobilising the developing communities. They provide expertise and experience in a community organisation which the government services do not possess, as well as augmenting the delivery of community-based primary health care (PHC) services. Furthermore, NGOs are generally quite successful at implementing projects, often with impressive improvements in the health status of those they serve. Thus, a partnership among governments and NGOs provides NGOs with a macro perspective and a replicable unit of operation; and the governments with a more trusting mode of entry into the community, and the means to deliver community-based PHC services. Even more, NGOs provide health services with a special emphasis on health promotion, prevention and education, whereas governmental medical facilities stress more commonly on the secondary and tertiary health care.
Bulgaria’s location between Europe and Asia, has played a strong role in shaping its political and economic strategies. During the hard years after the fall of communism, despite of the many economical problems, the country succeeded to keep the peace and became one of the most important factors for the stability on the Balkans. Today, the successful reforms and democratization led Bulgaria to a full membership in NATO and expected acceptance in the European Union in 2007.
The Bulgarian Association for Promotion of Education and Science (BAPES) is a non-government and non-profit organization, registered under the Bulgarian law on legal persons with non-profit purposes in 2003. The main objectives of the association are:
BAPES is working to achieve its objectives by the following activities:
The main project of BAPES is the establishment and running of the Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) - the first Eastern European information and educational service, dedicated to all patients, associations and medical professionals, interested in rare diseases and orphan drugs. The centre is situated in Plovdiv (Bulgaria) and serves free of charge users from Bulgaria, the other Eastern European countries and people from all over the world.
The establishment of the Information
Centre for Rare Diseases and Orphan Drugs, the important geographic and
geopolitical location of the country, as well as its forthcoming acceptance
in EU made Bulgaria a suitable, secure and promising place for organizing the
1st Eastern European Conference on Rare Disease and Orphan Drugs.
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