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O etičkim i društvenim aspektima retkih bolesti

dc.contributor.editorMilidrag, Predrag
dc.creatorKrajnović, Dušanka
dc.description.abstractRare diseases are a heterogenic group of disorders with a little in common except of their rarity affecting by less than 5 : 10.000 people. In the world is registered about 6000-8000 rare diseases with 6–8% suffering population only in the European Union. In spite of rarity, they represent an important medical and social problem due to their incidence. For many rare diseases have no treatment, but if it exists and if started on time as being available to patients, there is a good prognosis for them to be able for normal life. The problems of patients affected by rare diseases are related to the lack of diagnosis and timely undergoing as well as their treatment or prevention. Orphan drugs are products intended for treatment, diagnosis or prevention of rare diseases, but for their development and marketing the industry has not been interested in yet because of their marketing reasons. Patients suffering from a rare disease although belonging to the vulnerable group for their specific health needs,is becoming invisible in the health care system due to their additional needs unproperly recognized. Ethical problems faced by patients, but also health care professionals are related to the allocation of medical diagnostics, unequal approach to health care, inappropriately specialized social services as well as therapy and rare orphan drugs unavailability. Ethical questions related to clinical trails on orphan drugs, population screening and epidemiology testing on rare diseases will also be discussed in this paper.eng
dc.format23 4 (2012) 32-48
dc.relationinfo:eu-repo/grantAgreement/MESTD/Integrated and Interdisciplinary Research (IIR or III)/41004/RS//
dc.sourceFilozofija i društvo/Philosophy and Societymul
dc.subjectdrugs’ availability
dc.subjectorphan drugs
dc.subjectpatients’ social problems
dc.subjectrare diseases
dc.titleEthical and Social Aspects on Rare Diseaseseng
dc.titleO etičkim i društvenim aspektima retkih bolestisr
dcterms.abstractКрајновић, Душанка; О етичким и друштвеним аспектима ретких болести; Етхицал анд Социал Aспецтс он Раре Дисеасес;

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