RARE (ORPHAN) DISEASES: SOCIO–LEGAL ASPECT
نویسندگان
چکیده
The article is devoted to the problem of ensuring right health protection and medical care, organization provision care children with rare (orphan) diseases are great relevance today, due increased attention it not only in Russia, but throughout world. This mainly high level economic social burden diseases. Orphan include congenital (hereditary) or acquired diseases, frequency which country world does exceed a certain number established by laws various countries.
 low incidence leads difficulties obtaining useful, reliable timely information about pathology; correctness diagnosis; lack adequate dispensary observation; limiting budgetary allocations for development orphan drugs and, as result, receipt appropriate treatment people suffering from
منابع مشابه
Rare diseases and orphan drugs.
According to the Regulation (EC) N. 141/2000 of the European Parliament and of the Council, rare diseases are life-threatening or chronically debilitating conditions, affecting no more than 5 in 10 000 persons in the European Community. It is estimated that between 6000 to 8000 distinct rare diseases affect up to 6% of the total EU population. Therefore, these conditions can be considered rare ...
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T he fifth International Congress on Rare Pulmonary Diseases and Orphan Drugs will take place in Milan, Italy, on February 8–9, 2013 (www.pulmonaryrarediseases. com). 10 yrs have passed since the first Congress was held. Since then, the Congress has taken place regularly every 2 yrs, with growing success and ever increasing numbers of participants and speakers from around the world. The Interna...
متن کامل[The pharmacist, rare diseases and orphan medicines].
Treatment of rare diseases is often complicated due to the difficulties posed by the research and development of medicines by the pharmacological industry. One of the greatest concerns of this group of patients, which is both scarce and diverse, is access to available medicines. The European Medicine Agency establishes the term orphan medicines and the incentives and bases for their commerciali...
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 کاملToward better management of rare and orphan pulmonary diseases.
Firstly, with a conservative estimate of primary or secondary lung involvement occurring in ∼5% of rare diseases (>6000 types), approximately 1–2 million people in the European Union are likely to be affected by rare pulmonary diseases. Therefore, cumulatively, rare pulmonary diseases account for a significant burden of disease, as many of them are severe conditions that result in premature dea...
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ژورنال
عنوان ژورنال: Society and security insights
سال: 2023
ISSN: ['2619-0249', '2619-0230']
DOI: https://doi.org/10.14258/ssi(2023)1-09