Impressions from the “QualityofLife4OI” Conference I attended the QualityofLife4OI conference in Amsterdam last month. I wasn’t sure if it was a good idea to go, because I had to move apartment two days after the conference. Luckily I decided to go and it was such an amazing trip and I managed to pack my apartment…
The Health and Art (HEART) Group are planning to organize the 5th International Festival of Paintings for Pediatric Patients (IFPPP) in November 2019, in Budapest, Hungary. They cordially invite all children and adolescents (<18 years old), who were admitted in a hospital during their life, to submit their paintings to the festival. Instructions: Painting (Drawing)…
The OIFE Youth event will take place between 23rd to 27th, October 2019 in Bilbao, Spain. The goals of the OIFE Youth Event are: – sharing experience & ideas across borders – networking and getting to know young people with OI in other countries – social activities and fun – to create awareness about OIFE…
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…
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…
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…
The OIFE Youth event will take place between the 24.-28. October 2018 in Aarhus, Denmark. Registration for the 2018 event closed on June 15th. We have participants from 11 different countries who have registered. The goals of the OIFE Youth Event sharing experience & ideas across borders networking and getting to know young people with…
In that moment when you hear the bone break, it affects all of us. In a fraction of a second unpleasant emotions arrives. We have been here before. We will definitely be here again. We have become experts in a life with a disability. My disability. Each of us have our own ways to handle…
