It affects all of us

In that moment when you hear the bone break, it affects all of us. In a fraction of a second unpleasant emotions arrives. We have been here before. We will definitely be here again. We have become experts in a life with a disability. My disability. Each of us have our own ways to handle…

Girl with woman in south africaMEMBERS

New OIFE member: Brittle Bones South Africa

By Rageema Livingstone, chair of Brittle Bones South Africa  Who are you and what is your relationship to OI? My relationship with OI started nearly 12 years ago when my daughter was born with the condition. She is diagnosed as type 3 and currently wheelchair bound as she is experiencing bone thinning to the extent…


Artists with OI: Mira Thompson

Who are you and what do you do? My name is Mira Thompson and I’m a singer. In what way has OI affected your art?
 As much as I want to say it hasn’t, I also know it completely affects the way I look at life in general. Which does not mean every song I…

ECRD conference groupCONFERENCES

Vienna 2018 – EURORDIS, RDI & ECRD

Inger-Margrethe and Ingunn were so lucky to be able to represent NFOI and OIFE  in beautiful Vienna, Austria where they were joined by Rebecca Tvedt Skarberg (OIFE/ERN BOND) and Dace Liepina (OI Latvia – LOIB). André Wittwer and Knut Erik T. Skarberg were also there to keep the ladies company.  This is the report from…

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…

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…


Artists with OI: Fabiano Lioi

Fabiano Lioi from Italy is an actor, musician and artist with OI. He has published an artistic catalog which is also and above all a journey to discover a condition unknown to many, namely Osteogenesis imperfecta. This interview was first published in OIFE Magazine in spring 2018. Who are you and what do you do?…


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…

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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