![]() Lisbeth Tranebjaerg, Professor of Medical Genetics and Genetic Audiology, explains what is involved genetically. He emphasises that by better understanding the unique characteristics and how they interact, we can gain a better understanding of related behaviours.ĬHARGE syndrome is caused by a genetic mutation. Timothy Hartshorne speaks about behavioural issues associated with CHARGE syndrome in this video. In this video, she talks about features, characteristics, medical complications and how they manifest themselves in children with CHARGE. Pamela Ryan, School Psychologist at Perkins School for the Blind, provides an overview of CHARGE syndrome. You can read more about these aspects in this brochure (Swedish) from the Swedish National Information Centre for Deafblindness Issues (NKCDB). NKCDB has additional material (in Swedish), including a brief description of CHARGE syndrome and a review of a medical care programme for people with CHARGE syndrome. People with CHARGE often employ a range of strategies to compensate for their inner stress and their disabilities. At the same time, intellectual capabilities may lie within the normal range. The impairment of multiple senses results in delayed development for children. ![]() The senses of smell and taste, along with muscles, and joints, are – in addition to hearing, vision and balance – also frequently affected. Swallowing and breathing problems can also cause difficulties when the child comes home from the hospital, and these problems sometimes persist their whole lives. ![]() It is common for them to undergo frequent and lengthy hospital stays, and surgery and treatments are often necessary. The social aspects in different environments have been discussed in the network on multiple levels in recent years.Ĭhildren with CHARGE syndrome often have life-threatening conditions from birth, such as heart problems and breathing difficulties. Another focus area has been communication and what tactile communication support may entail. From their respective countries, network members report on and disseminate results from projects, conferences, and publications relevant to the area.Īmong other things, the network has mapped pain felt by those afflicted and gained new insights into how pain can be perceived and expressed. Since then, the network has focused on collecting, sharing, and disseminating knowledge about CHARGE syndrome. The Nordic Network for CHARGE Syndrome was established in 2002. ![]() United Nations Convention on the Rights of Persons with Disabilities.The Council for Nordic Cooperation on Disability.Health and social care for the elderly. ![]()
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