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Approximately 4 million patients with a rare disease live in Germany. The medical care of these patients is problematic because of the rarity and heterogeneity of different clinical pictures. The Federal Ministry of Health has therefore published a research report on “Measures to improve the health situation of people with rare diseases in Germany” in […]
…The problem of the need for primary care (PC) training in rare diseases (RD) is approached through a qualitative research study that tries to define its relevance and to identify the need for RD training in PC.By means of naturalistic research methods (in-depth interviews and group dynamics), we tried to discover the personal and professional […]
…All rare diseases present a common set of challenges to the sufferers and their families: diagnosis, dealing with symptoms, health information, obtaining helpful medical care, availability of medications, disability and emotional impact. Children with rare disorders are an important population from health care services, and social services perspectives, and families are providing long-term care for […]
…The increase in scientific knowledge and the need for its transmission to health professionals and patients has resulted in the creation of websites as a useful tool. In low prevalence diseases, such as rare diseases (RDs), sites are being created by scientific societies, institutions and patients. This section reviews the most important websites dealing with […]
…Diagnosis of and care for people with rare diseases are a challenge. Most rare diseases are inherited with clinical presentation in early childhood, complex with involvement of several organ systems and progressive with ever changing phenotype. Physical and neurological disability makes many families dependent on social security. In Denmark and in a few other EU […]
…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 […]
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