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Orphan drugs (ODs) are products developed for the diagnosis and/or treatment of rare diseases and conditions. Patients with this group of disorders have historically been denied access to medical therapy because prescription drug manufacturers could rarely make a profit from marketing such drugs. This changed in 1983, when the U.S. Congress passed the Orphan Drug […]
…There are approximately 6000 rare diseases, and 80% of them are genetic. In Europe, a disease is considered rare when it affects no more than one person in 2000. In France, two to three million people are affected, while nearly 30 million others are affected across Europe (5-8% of the whole European population). The majority […]
…Patients with one of the 6,000 rare diseases that are at the present time known to exist, together form a large group. Relevant information, a correct diagnosis and appropriate and adequate therapy are sometimes difficult to obtain for these vulnerable patients. Physicians and researchers are increasingly working in networks to record the findings of research […]
…Orphanet is a European initiative that aims to improve the management and treatment of rare diseases. It comprises a database dedicated to information on rare diseases and orphan drugs, and offers services adapted to the needs of patients and their families, health professionals, and researchers. The database can be accessed through the website (www.orpha.net) and […]
…The article gives a brief review of some rare diseases of the lungs. According to international registers, rare diseases are those which occur in one individual per 2000 population. Brief characteristics, description of pathological anatomy of tumor and other lesions of the lungs are outlined.
…Patients living with rare diseases have special common needs. Although the 5,000-6,000 rare diseases are very different, many patients share the experience of a time-consuming and sometimes frustrating journey towards diagnosis, the lack of established standards of care and foremost the search for competent physicians. Because of their complexity, rare diseases mostly demand an interdisciplinary […]
…Identify the elements that lead to the perception that primary health care physicians (PHCP) have as regards rare diseases (RD) as a whole, and to analyse the characteristics of these patients with rare diseases.Descriptive cross-sectional study. Surveys completed by PHCP during the years 2008-2010 were used to explore socio-demographic data, health care facilities, manpower, and […]
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