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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EVENTS

OIFE Youth Event 2018

By Lars Nesset Romundstad, Translation: Ingunn Westerheim From October 25th to 28th 2018 Kristian and I traveled from Norway to Århus in Denmark to attend the annual OIFE Youth event. The traditional youth event took place in the Pindstrup Centre and was organized by the Danish girls Malene, Ninna, Matilde and Marie, who’s one of…

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EVENTS

Training for Young Patient Advocates

The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’. Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The…

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MEMBERS

New OIFE member – Ukraine

Who are you and what is your relationship to OI? My name is Karina and I am mother to 8 year old girl with OI type 3. We live in Rovno, which is located in Western Ukraine. Can you tell us a few words about Ukraine? Ukraine is a country in Eastern Europe. It has…

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STORIES

My voluntary work in Ghana

I am Stefanie Ritzrow, 19 years old and just graduated from school this year. I have OI type IV and use a wheelchair as, I cannot walk. My biggest passion is traveling and I always wanted to combine that with being a helpful hand and experiencing more than a normal holiday. In December 2017 the…

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MEDICAL

Psychosocial aspects in OI

In 2019 Care4BrittleBones would like to build up a network to foster knowledge exchange around psychosocial aspects of OI. The network will be led by Dr. Kara Ayers (photo) from Cincinnati children’s hospital, USA and Dr. Claire Hill from Sheffield’s children hospital, UK. The purpose of the network is to explore key topics of shared…

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MEMBERS

“The Transformation” – Russian Youth Project

In December 2018 Russian Charitable Foundation “Brittle People” started its the most outstanding online-project “The Transformation”, focused on children and teenagers with OI professional skill and psychological health. Inspiring “The Transformation” program success, Fund’s psychologist Aleksandr Kharitonov decided to run another one – “The Course of Success”. It has been started in September 2018. Both…

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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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