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The dermatologist’s role as a front-line medical practitioner in the field of rare diseases is a fundamental one. He actually comes up against rare diseases not only among dermatological disorders per se but also because skin lesions may sometimes reflect an underlying disorder and patients can often be referred from other medical departments Resumen realizado […]
…A rare disease is a disease affecting less than 5 in 10000 individuals. There are over 7000 rare diseases registered to date, of which 80% are genetic. New rare diseases are identified and defined on a weekly basis. Rare diseases affect around 1.3 million people in Romania and 25 million people in Europe. A large […]
…Sustained advocacy efforts driven by patients’ organizations to make rare diseases a health priority have led to regulatory and economic incentives for industry to develop drugs for these diseases, known as orphan drugs. These incentives, enacted in regulations first introduced in the United States in 1983 and later in Japan, Europe and elsewhere, have resulted […]
…This six-part series on rare diseases aims to increase awareness and offer advice on how nurses can help patients. Part 1 uses a case study to illustrate the complexity of caring for people with rare diseases and provides pointers on how the care of this patient group can be improved. Resumen realizado por los autores […]
…Rare diseases are life-threatening or chronically debilitating diseases with a prevalence lower than one per 2000 in the European Community or one per 1250 in the USA. Only a few of the 5000 recognised rare diseases have a prevalence close to those limits, and most of them are much rarer, such as muscular dystrophy, or […]
…Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems. Originating from outside WHO, an incentive system has been put in place by various governments for the development of […]
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