CONFERENCES

The Voice of People with OI

One of OIFE’s goals is to represent our members on an international level and be the voice of people with OI and their families. One of our representatives is Rebecca T. Skarberg. She is the voice of people with OI in the European Reference Network for Rare Bone Disorders (ERN-BOND), who had their annual technical…

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CONFERENCES

News about ERN-BOND

Rebecca Tvedt Skarberg (suggested OIFEePAG in ERN-BOND) attended the 4th Conference on European Reference Networks (ERNs) that took place in Brussels on November 22nd and 23rd 2018. “Think globally, act locally” was one of the messages from the conference. We all need to support and protect the networks to build sustainability and reach out to…

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CONFERENCES

OIFE at Mereo

On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…

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CONFERENCES

Quality of Life 4 OI

Make sure you mark the date November 22nd – 25th 2019, when the international conference QualityofLife4OI will take place in Amsterdam. The conference is an initative from Care4Brittle Bones and is hosted by a coalition of OI-organizations (Care4BB, OIFE and OIF), Medical professionals (ERN – BOND) and the Industry. It is coordinated by Foundation Care4BrittleBones.…

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CONFERENCES

Flashbacks from Baltimore

The 2018 OIF National Conference, themed EXPLORE, gathered over 650 attendees and 50 speakers for a busy and memorable weekend in Baltimore, Maryland! The attendees of this summer’s conference represented seven countries and nearly forty US states. And on behalf of the OIFE I thank the OIF for the kind invitation to take part in…

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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…

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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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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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