ADVOCACY

The IMPACT Survey has a new home!

Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…

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Male Person with dark hair and light blue Shirt giving a talkRESEARCH

New PhD: Chronic pain in adults with OI

New PhD in OI: Experience of Chronic pain in adults with OI Interview with Rubén Muñoz Cortés My name is Rubén Muñoz Cortés and I work as a psychologist at Fundación AHUCE. I am specialized in clinical psychology, and my primary role involves offering psychological therapy to individuals with osteogenesis imperfecta (OI) or other dysplasias,…

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MEDICAL

Newborn Screening Programme in UK

Interview with Meena Balasubramanian My name is Meena Balasubramanian. I am a clinician-scientist specialising in bone genetics at the University of Sheffield and Sheffield Children’s Hospital in the UK. I have worked in Sheffield over the last 15 years. I started here as a Clinical Genetics trainee having previously worked as a paediatrician and did my…

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Conference flyerRESEARCH

Drug repurposing event in Barcelona

On the 6th and 7th of March 2024, the international conference iDR24 took place in the Modernist Campus at Sant Pau Hospital in Barcelona (Spain), organized by REMEDi4ALL, Beacon for Rare Diseases and MeRIT. More than 50 speakers from across this broad range of disciplines gathered to deep-dive into the evolving landscape of drug repurposing.…

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RESEARCH

New PhD: Extra skeletal complications in OI

New PhD in OI – Extra skeletal complications in OI Interview with Silvia Storoni Who are you & what is your relationship to OI? I am Silvia Storoni, a physician specializing in internal medicine with a particular interest in endocrinology. A few years ago, I came in contact with Dr. Marelise Eekhoff and Dr. Dimitra…

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logo IMPACT surveyRESEARCH

First article from IMPACT Survey published

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…

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CONFERENCES

Remedi4All – Meeting on OI in Bologna

The Remedi4All consortium & the MOI-A Trial (Losartan) Information provided by Claudia Fuchs, EURORDIS What is Remedi4All? The EU-funded multidisciplinary consortium REMEDi4ALL (Repurposing Medicines for All) has an ambition to establish a European research and innovation eco-system that facilitates fast and cost-effective patient-centric development and implementation of repurposed medicines, meeting high unmet medical needs in…

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Graphic data from the Impact surveyMEDICAL

Adult Health resource group

Interview with Eric Orwoll, Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine and Dr. Lars Folkestad, member of OIFE’s Medical Advisory Board Due to common interests in adults with OI, Prof. Eric Orwoll and Dr. Lars Folkestad identified researchers and clinicians who have worked on adult care and formed a…

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