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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ADVOCACY

The European Registry for Rare Bone & Mineral Conditions (EuRR-Bone)

Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…

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MEDICAL

The systematic spiral

How clinical work, registries, research, guidelines and quality improvement are connected Interview with Lena Lande Wekre, M.D. in the Skeletal dysplasia team at TRS National Resource Centre for Rare Disorders, Norway Who are you and where are you currently working? My name is Lena Lande Wekre and I am a Medical Doctor in the Skeletal…

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OIFE

OIFE AGM 2021

Our Annual General Meeting (AGM) 2021 took place on Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…

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EuRRbone logoRESEARCH

Provide OI Data to e-Rec !

The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…

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RESEARCH

Norwegian registry for rare bone conditions

A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…

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A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning  nightmare. Needing help with most of the  practical stuff because of my disability, doesn’t make it any better. For every box that needs to  be moved or carried, every lamp that…

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ADVOCACY

OIFE at Summer School on Registries

EuRR-Bone Registry Did you know that there is a European registry on rare bone disorders being developed? It’s called EuRR-Bone and has received funding from the EU. OIFE has two patient representatives involved in the development of EuRR-Bone including the disease specific module on OI. Summer School on Rare Disease Registries To become more knowledgeable…

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RESEARCH

Focus Groups – Key4OI Plus

Some people felt that the project Key4OI were missing some important aspects of adult health in OI, when the first set of outcome measures in OI was developed. Now the project wants to develop an additional, supplementary set of outcome measures for 4 new areas.   Ears, teeth, lungs and heart Key4OI wants to develop…

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