Child hand in adults handMEDICAL

Child abuse & OI – from geneticist perspective

Interview with Professor Gerard Pals, biochemist (MSc) and geneticist (PhD) at the VU university hospital in Amsterdam, The Netherlands Who are you and what is your relationship to OI? I am a biochemist (MSc) and geneticist (PhD). In 1989 I started a diagnostic laboratory for DNA and protein testing of inherited diseases, including OI, at…

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Sofie and familyMEDICAL

Wrongly accused of child abuse

Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4 Who are you and what is your relationship to OI? My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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CONFERENCES

Registration is open – OIFE Investigator Meeting

The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from our Medical Advisory Board invite you to register for the very first virtual European Investigator Meeting for osteogenesis imperfecta (OI), which we hope will become an annual tradition. The event will take place on Zoom November 18th 2022, 2 PM – 7…

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PhD position in molecular/cell biology

Are you looking for a PhD position in molecular/cell biology? Check out the doctoral position of molecular/cell biologist at the Centre for Connective Tissue Research of Dr. D. Micha, Human Genetics Department, Amsterdam UMC! The PhD student will be involved in the development of pharmacological and gene therapy for the rare genetic bone fragility disorder Osteogenesis…

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MEDICAL

Key4OI – Past, Present and Future

Who are you and what is your relationship to OI? I am Dagmar Mekking from the Netherlands. I am a mother of a 15 year old daughter with OI. Also I am the director of Foundation Care4BrittleBones. The purpose of the foundation is to improve quality of life for people with OI through research. What…

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EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

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ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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CONFERENCES

Call for abstracts for IntOI 2020+1

IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…

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