Girl with cast in wheelchairEDUCATIONAL

School kit for children with OI

Starting school or changing school is a big step in the life of a child or adolescent, and very likely a lot more if a have condition that makes their bones more fragile than their peers. A tool was created to ease these transitions as much as possible for students with OI. In collaboration with…

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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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RESEARCH

Study: Voice and OI

Due to the phenomenon of the “higher pitched voice” described in the literature, the question arose in Katharina Böhm’s mind whether the voice was altered in OI. The aim of her study was to find out by means of voice analyses whether there are pathological changes in the voice sound in people with OI. We…

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MEDICAL

Other Rare Bone Diseases than OI: FOP

Because some of the other rare bone conditions are very rare or very little known, OIFE can play a role in creating awareness and spreading information about these conditions, which very often have a lot of commonalities with OI. This is why we have started a column about other rare bone conditions, where we will…

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Portrait Felipe MateoSTORIES

Artist with OI: Felipe Mateos

For the Artists with OI-column in the OIFE Magazine, we interviewed Felipe Mateos, a stand-up comedian from Spain.  Tell us a bit about yourself! I’m 27 years old and I’ve been a stand-up comedian for eight years. Little by little I am better known in Spain (Television, radio, social networks…) and I have many followers…

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MEMBERS

Meet OIFE delegate Jesús from Panama

I am Jesús Camilo Osorio Barahona, I am a happy husband, being married to Daysi, a woman that supports me and believes in me.  I am the father of two beautiful daughters, Lluvia and Luna (one of which has OI) and I have OI myself.  I’ve been lucky to have my parents, my wife and my…

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CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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ADVOCACY

OIFE AT EFPIA PATIENT THINK TANK

November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…

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