Osteogenesis Imperfecta Federation Europe’s Post

ARTICLE ABOUT SPANISH OI POPULATION Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition: availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. #osteogenesisimperfecta

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Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. https://lnkd.in/eZ7THnPR. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden of the disease, management, and unmet need. The study also highlights the priorities for improving the management of the condition:  availability of consensus documents and treatment guidelines, the establishment of multidisciplinary management throughout a person’s life, and the approval of the new therapies. Thank you to the clinician experts in OI who contributed real life experience and data from Spanish hospitals, supported the development of the study questionnaire and validated the final results. #osteogenesisimperfecta #OI

BMC, research in progress

BMC, research in progress

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