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Lecturer(s)
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Kočová Helena, Mgr. Ph.D.
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Course content
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1. Target group of children, adolescents and adult patients with rare diseases - description and types of diseases, course of progression and treatment in multidisciplinary care and teamwork 2. EURORDIS is attracting an increasing number of patient organisations outside of Europe and is gaining traction at promoting rare diseases at the international level. "Orphan drugs" are medicinal products intended for diagnosis, prevention or treatment of life-threatening or debilitating rare diseases. 3. Czech Association for Rare Diseases and Early Diagnosis, Psychosocial Support, Treatment and Sharing Good Practice. EU and Czech policy and rare diseases. Specialized centers - European Reference Networks (ERN). 4. Spinal muscular atrophy, Muscular dystrophy, treatment, Newborn screening and Quality of life and 5. Alternative and augmentative communication in the most difficult types of RD, home lung ventilation and tracheostomy, supportive aids for communication. 6. Palliative care for patients with RD
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Learning activities and teaching methods
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Dialogic (discussion, interview, brainstorming), Activating (simulations, games, drama), Individual preparation for exam, Individual tutoring
- Preparation for classes
- 30 hours per semester
- Class attendance
- 5 hours per semester
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Learning outcomes
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Target group of children, adolescents and adult patients with rare diseases - description and types of diseases, course of progression and treatment in multidisciplinary care and teamwork. EURORDIS is attracting an increasing number of patient organisations outside of Europe and is gaining traction at promoting rare diseases at the international level. "Orphan drugs" are medicinal products intended for diagnosis, prevention or treatment of life-threatening or debilitating rare diseases.
It is assumed that the acquired knowledge and knowledge about the problem of various diseases will be used in practice
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Prerequisites
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An active interest in the issue of various diseases in context is assumed
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Assessment methods and criteria
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Oral examination, Student performance assessment, Interview, Systematic student observation, Seminar work
Presentation on the topic of rare diseases and oral exam.
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Recommended literature
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BRADLYN,A.S;VARNI,J.W;HINDS,P.S. Assessing Healted-related Quality of Life in end of Life Care for CHildern And Adolescents. 2003.
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Cohen, J. S. , and Biesecker B. B.. Quality of life in rare genetic conditions: a systematic review. .
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KOCOVA,H. Dvorackova,O.,Vondracek,P.,Haberlova,J. Health-Related Quality of Life in Children and Adolescents. Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic. USA. 2014.
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PELCHAT,D. ;LEFEBVRE,H. A holistic intervention programme for families with child with a disability. .
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SCHROTH, M. Breathing basics. USA. 2006.
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SIMONDS, A. Ethical aspects of home long term ventilation in children with neuromuscular disease. .
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