RESEARCH

Osteoarthritis in OI

Interview with Jane Dahl Andersen, MD with specialty in Endocrinology and Internal Medicine at Lillebælt Hospital, Denmark My name is Jane, I am a MD with specialty in Endocrinology and Internal medicine. My specific interest is in bone and calcium metabolism, in particular the rare disease OI. In the Bente Langdahl group at Aarhus University…

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RESEARCH

OI & fracture risk after pregnancy

Interview with Emilie Karense Lykking, newly graduate doctor from University of Southern Denmark I am a newly graduate doctor from University of Southern Denmark, who found interest in OI during my final year of Med. School. At the moment I am working at the department of endocrinology at Bispebjerg Hospital in Copenhagen. I wrote my…

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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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RESEARCH

Risk of eye disease in OI

Interview with Marie Louise Lyster, medical student from University of Southern Denmark in Odense My name is Marie Louise Lyster. I am a 26-year-old medical student from University of Southern Denmark in Odense, graduating in January 2022. In the beginning of 2021, I started working on my research project about risk of eye diseases in…

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A young girl from Asian origin sitting in a manual wheelchair.OIFE

New OIFE Youth Coordinator

Interview with Simey Truong, Germany My name is Simey Truong. I am 26 years old and have OI type 3, so I am bit short (I am only 1.12m tall) and sitting in a wheelchair. During my childhood I had a lot of fractures, but they didn’t stop me from experiencing a lot. I’m a…

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EDITORIALS

Do No Harm!

Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…

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OIFE

In 2021 we made an impact together!

Dear members of the international OI-community!  In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…

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MEDICAL

New members in ERN BOND

On 1 January 2022, 620 new members will join the European Reference Networks, as unanimously approved by the ERN Board of Member States. As a result of the current call there will be nearly 1,500 ERN units in 27 Member States and Norway. The European Reference Network on Rare Bone Disorders (ERN BOND) suffered to…

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ADVOCACY

EUnetHA Stakeholder Meeting

The EUnetHTA was established to create an effective and sustainable network for health technology assessment (HTA) across Europe. EUnetHTA supports collaboration between European HTA organisations that brings value at the European, national, and regional level through: The facilitation of efficient HTA resource use. The creation of a sustainable system of HTA knowledge sharing. The promotion…

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