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…
OIFE had several representatives in Brussels this week. Our Honorary Member Taco van Welzenis attended the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies: https://www.eurordis.org/3rd-access-symposium During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. You can see a recording of the whole…
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…
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…
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…
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…
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…
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…
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…
