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’. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden…
The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives. On March 21st the first article based on results from the IMPACT Survey was published in Orphanet Journal: “The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and…
An article called “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published recently in Orphanet Journal of Rare Diseases. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and…
The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 See also more resources about Covid19 in English from…
Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
