Q for qualityEDITORIALS

Q for Quality

What is quality of life? I guess there are almost as many answers to that question as there are people on the planet. During one of the sessions at the ECRD conference, we were asked to use an app to create a wordcloud of what really mattered regarding quality of life. The words that got…

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Epos conferenceCONFERENCES

OIFE at EPOS conference

The 37th Annual Meeting of the European Pediatric Orthopedic Society (EPOS) took place in Oslo in April. The conference annually gather more than 500 pediatric orthopedic surgeons, many of them working with OI. Since we knew both the international chair (dr. Darko Anticevic) and the national chair (dr. Terje Terjesen), we took the liberty of…

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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ERN Bond group photoCONFERENCES

News from ERN-BOND

On the occasion of Rare Disease Day (February 28th) the European Reference Network for Rare Bone Disorders (ERN-BOND) organized a European Parliamentary Meeting called: European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients. The meeting was kindly hosted by MEP Elena Gentile (S&D, IT) with support from EURORDIS. The OIFE was represented at…

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Penny and Eskil at edge of mountainSTORIES

Artists with OI: Penny Clapcott

Penny Clapcott from the UK has always been very active despite her OI. Having broken four World Records in competitive swimming at the age of 15, she took the challenge of becoming an aereal circus performer. I’m Penny Clapcott and I’m 29 years old from the UK with type 3 OI. I have always been…

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EDITORIALS

Dare to…

There is perhaps no consistent theme in the January edition of the OIFE Magazine. But maybe I just haven’t looked close enough? After thinking about it one more time, it occurred to me that maybe the theme of this newsletter is to dare? The Portuguese project you can read about in this edition was called…

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STORIES

Artists with OI: Maija Karhunen

Maija Karhunen is a young woman with OI and lives in Helsinki, Finland. She has been working as a dancer, performer and journalist all across Europe.  Who are you and what do you do? My name is Maija Karhunen, I’m 29 years old and live in Helsinki, Finland. I mostly work as dancer and performer…

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