EVENTS

OIFE Youth Event 2019

OIFE youth event 2019 was hosted by the Spanish OI Society AHUCE and saw 49 participants between the ages of 18 to 35 from all over Europe (10 different countries in total) come together for a variety of activities and socialising. Gareth Cumming from the UK attended the event and here is what he wrote:…

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CONFERENCES

Marie’s Youth Corner

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…

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YOUTH

Art contest for children

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)…

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EVENTS

OIFE Youth Event – Registration is open!

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…

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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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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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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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MEDICAL

Transition – OI care from childhood to adulthood

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…

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