<p>Ethical Questions Linked to Rare Diseases and Orphan Drugs – A Systematic Review</p>
نویسندگان
چکیده
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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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...
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In 1581 Rembert Dodoens wrote "Medicinalium observationum exempla rara, recognita et aucta" a Latin book about the diagnosis and treatment of disorders with a low prevalence.
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445 ing or evaluating the work of so many volunteers. Some organizations conduct internal evaluations, and they tend to agree with experienced volunteers on some guidelines for effective overseas missions. It is best, they say, to send an advance team so that requirements such as lodging, an adequate electrical supply, clinic space, and surgical facilities can be anticipated. Many stress the im...
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Affiliations: U.O. di Pneumologia e Terapia Semi-Intensiva Respiratoria, Servizio di Fisiopatologia Respiratoria ed Emodinamica Polmonare, Ospedale San Giuseppe, MultiMedica IRCCS, Milan, Italy. Univ. Paris-Sud, Faculté de Médecine, Le Kremlin-Bicêtre, France. AP-HP, Centre de Référence de l’Hypertension Pulmonaire Sévère, Département Hospitalo-Universitaire (DHU) Thorax Innovation (TORINO), Se...
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ژورنال
عنوان ژورنال: Risk Management and Healthcare Policy
سال: 2020
ISSN: 1179-1594
DOI: 10.2147/rmhp.s260641