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…
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…
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…
What is the Transfer Tool? The OI transfer tool is a portable, clinically meaningful, person-focused tool designed to help improve the transition experience for adolescents and young adults living with OI. Once completed, the tool summarizes the adolescents’ time spent receiving OI care in the paediatric setting, and is intended to be given to their…
“I would so much like young people to have a sense of the gift that they are.” – John Denver. It took me a good while to find the perfect quote to start this editorial, because for some reason most quotes about youth I found were either bitter or condescending. Instead, I wanted to highlight…
