Osteogenesis Imperfecta Federation Europe

NEWS FROM OI RESEARCH - ADULTS In a recent research project from Chinese researchers - they compared the effect of Denosumab and Zoledronic acid (bisphosphonate) in 51 adults with OI. They concluded that both Denosumab and Zoledronic acid effectively increases bone mineral density in adults with OI. However long-term and large-sample studies are needed to confirm the antifracture efficacy and safety of denosumab in adult patients with OI. Read the whole article here: https://lnkd.in/d94fygFP #osteogenesisimperfecta

SAVE THE DATE – OI2025 IN HONG KONG We have all been waiting for this to be announced. Now it has been confirmed – the 15th international scientific conference on OI will take place in Hong Kong, from October 29-31, 2025. It will be organized by Hong Kong University and the conference chair is orhopaedic surgeon dr. Michael To. Follow OI20225.org and oife.org for updates! #osteogenesisimperfecta

BETTER CLINICAL TRIAL INFORMATION IN EUROPE The launch of a new version of the Clinical Trials Information System (CTIS) will allow earlier and more efficient access to information about clinical trials in the European Union (EU) for patients, healthcare professionals and other stakeholders. This is due to the revised transparency rules that became applicable from June 2024 in Europe. Read more: https://lnkd.in/e4F7u7Fa On OIFE's webpage you can find a list of ongoing international clinical OI-related trials in Europe: https://lnkd.in/eVzkH3-w #clinicaltrials #osteogenesisimperfecta

OIF CONFERENCE ONLINE OPPORTUNITY Check out the possibility to attend 3 of the sessions of the national conference of the Osteogenesis Imperfecta Foundation online: - Opening session - Research Update - Pain Management #osteogenesisimperfecta

NEWS FROM OI RESEARCH The Danish team of Lars Folkestad has published two new articles on pregnany in OI and hearing loss and OI. Check them out! #osteogenesisimperfecta

MONEY FOR OI RESEARCH IN SPAIN! Fundación Mutua Madrileña will fund a study on OI, which will be led by the Granada Biomedical Research Institute nationwide. The aim of the research is to find the cause of osteogenesis imperfecta through a comprehensive analysis of patient genotype using next-generation sequencing. This approach will allow to determine the spectrum of the most frequent mutations associated with OI. In addition, gene therapy strategies will be developed with two main goals: first, to fund the development of genetic editing techniques to create experimental models that accurately reproduce conditions observed in patients; second, to develop gene therapies using adenosociated vectors, which have affinity for bone tissue, to correct the most common mutations. In the study, which will receive €200,000 funding, Fundación AHUCE - will actively participate and researchers from seven research institutes will collaborate. We congratulate the Spanish research community and patient organizations with this great news! #osteogenesisimperfecta

CALL FOR ABSTRACTS ON OI RESEARCH We are delighted to announce that the abstract form for OIFE’s 3rd virtual European Investigator Meeting is now open. The meeting takes place via Zoom on Friday 15 November from 14:00-19:00 CET.     We invite your abstracts on any aspect of OI research, whether basic, translational or clinical. A limited number of oral slots are available on the programme and priority will be given to abstracts describing novel research and hot topics related to OI.    We also encourage submission of case reports for discussion at the meeting. Please use the same form to submit any interesting and/or unusual cases.   Presentations will not be recorded or streamed outside of the webinar and abstracts will not be published, enabling the presentation and discussion of unpublished data.   This is an opportunity for you to present and discuss your OI-related work with an international group of fellow OI-researchers in a relatively informal setting and without the costs and time involved in travelling to in-person meetings. The aim is to facilitate collaboration and development of research in OI.   Deadline for abstracts: Friday, 4 October 23:59 CET. Link to submit abstracts and registration can be found here: https://lnkd.in/dzHDb8ra #osteogenesisimperfecta

BONE RESEARCH MEETING Tomorrow the annual meeting of the BRS starts in Sheffield, UK. Sessions will include talks by world-leading experts, a popular Early Career Researcher networking session, a Cancer and Bone Workshop, interactive image-based workshops, a Rare Bone Disease session, and much more. More information here: https://lnkd.in/eEJdjw2v #boneresearch #rarebone

FREE WEBINAR ON PAIN MANAGEMENT The World Patients Alliance (WPA) is hosting a webinar titled "Understanding and Managing Pain" on July 22, 2024, at 9 AM ET (3PM CET). This initiative aims to raise awareness and provide valuable insights into pain management, helping those who suffer from pain lead easier, more fulfilling lives. During this webinar we will look at the types of pain, the treatments available, the stigma of pain and more. We will also learn what a person who finds they must live with pain long term can do to help better manage it so they can live a full life despite pain. A person who lives with pain daily will share the impact it has on her life and the resources available to her. Register here: https://lnkd.in/dYySgP6E #painmanagement #painandOI #osteogenesisimperfecta

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