01/10/2003
Formación
Conferencia europea sobre la dislexia que tendrá lugar en Budapest, Hungría del 2 al 4 de octubre de 2003.
…Discapacidad
Conferencia europea sobre la dislexia que tendrá lugar en Budapest, Hungría del 2 al 4 de octubre de 2003.
…Encuentro a favor del desarrollo y el conocimiento multicultural que tendrá lugar en Debrecen (Hungría), del 8 al 11 de mayo de 2003.
…The present paper is focusing on rare diseases manifesting in late childhood or adulthood. A part of these syndromes are not of genetic origin, such as relatively or absolutely rare infections, autoimmune diseases, tumours, or diseases due to rare environmental toxic agents. In addition, even a large proportion of genetic disorders may develop in adulthood […]
…The long diagnostic delay is a characteristic problem of rare disease patients.Diagnostic delay was studied in 14 countries by EurordisCare2 involving patient organizations.252 Hungarian patients (cystic fibrosis; Duchenne muscular dystrophy; tuberous sclerosis, retinitis pigmentosa, and Williams’ syndrome) completed the questionnaires.The median delay was longer in Hungary than in Europe (cystic fibrosis: 227 vs. 45 days; […]
…The rarity of low prevalence diseases and the lack of information, research, diagnosis, treatment and expert availability may mean that the people affected do not benefit from the health resources and services they need. Rare diseases are considered to have little impact on society as a whole, yet they pose serious difficulties for sufferers and […]
…The aim of the author is to discuss special issues of rare diseases, with emphasis on circumstances present in Hungary, including those leading to the foundation of the non-governmental organization, the Hungarian Federation of People with Rare and Congenital Diseases. The author briefly reviews the most important findings of current international surveys which have been […]
…80% of rare diseases have a genetic origin, and 50% manifest themselves as congenital anomalies. Their adequate health care includes early recognition of genetic anomalies and prevention of recurrence.The aims of the authors were to provide correct diagnoses to patients with multiple congenital anomalies with or without mental retardation attending to the outpatient clinic of […]
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