Photo from old town WarsawYOUTH

OIFE Youth Event cancelled

We received a great amount of applications from a record number of countries, for our second OIFE Youth Event. It’s therefore very sad to announce that the second OIFE Youth Event 2022 in Warsaw has been cancelled. Below you will find a message from the Polish organizers: “Some of you may have heard we have…

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MEDICAL

OI & Reproduction

Dr. Lidiia Zhytnik is a post-doc researcher at UMC Amsterdam, The Netherlands and a member of OIFE’s Medical Advisory Board. She has been part of a team who made a narrative review to systematize novel insights into OI genetics, reproductive options, family planning, decision-making and ethical issues. The team aimed to fill the existing gaps…

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RESEARCH

Get in Touch – OI Variant Database

The Osteogenesis Imperfecta Variant Database (OIVD) is the only database worldwide dedicated to OI, in which genetic variants are evaluated by experts in OI molecular genetics. The OI Variant Database has been serving the OI community for decades by providing a reliable source to consult about the pathogenicity of genetic variants. History of the OI…

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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

Virtual forum for OI surgeons

Interview with Dr. Jeanne Franzone & Dr. Richard Kruse, Nemours Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA Soon after the initiation of the COVID pandemic, in June of 2020, Dr. Jeanne Franzone c (Nemours Alfred I. duPont Hospital for Children, Wilmington, DE), Dr. Maegen Wallace (Children’s Hospital and Medical Center Omaha, NE) and Dr.…

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RESEARCH

Fetal diagnosis of OI during pregnancy

Interview with Shannon Bonner, graduate student of genetic counseling at Baylor College of Medicine, Houston, Texas, USA Who are you & what is your relationship to OI? My name is Shannon Bonner and I am currently a graduate student studying genetic counseling at Baylor College of Medicine which is located in Houston, Texas. In the…

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Pregnant belly and x-rayMEDICAL

Pregnancy in women with OI & Osteoporosis

By Claudia Finis, mother with OI and Prof. Dr. Ralf Oheim, Chair of the National Bone Board at Universitäts-Klinikum Hamburg-Eppendorf, Germany Claudia: “I can still remember the time when I felt like a big whale on four wheels meandering through the world. A vague idea about the existence of my knees and permanent heartburn accompanied…

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STORIES

Activist with OI: Umi Asaka

Umi, who is originally from Japan, moved to New Zealand after the nuclear disaster in Fukushima back in 2011. Today, she is living in an accessible house on South Island together with three friends. Umi talks about her life and what it means to live in New Zealand as an immigrant with a disability. My…

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