YOUTH

OIFE Youth Event in Italy

Written by: Malene Sillas Jensen & Lars Nesset Romundstad Time again for young people with OI to come together The 7th of September 2023, it was once again time for the young people of the European OI community to come together. This time in Lido di Jesolo, in the Veneto region of Italy, one hour…

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OIFE

New 2nd OIFE Youth Coordinator

Matilde Medum Nielsen has volunteered to help on the OIFE Youth Coordinator team. Matilde is from Denmark and was born with OI type III. She has been living in Aarhus her entire life until July 2022, when she moved to Townsville in Australia to study and fulfill her dream of becoming a marine biologist. Besides…

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EDITORIALS

Grow up and speak up!

Written by Malene Sillas, OIFE Board Member.  Growing up from childhood, becoming a young adult, I’ve always felt that whatever I do, it feels like I’m the first person to do it. I remember that the first time I felt that way, I was in my second year of high school. The whole class was…

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CONFERENCES

OIFE at EURORDIS Meeting

Written by Lars Romundstad, OIFE volunteer from Norway  EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm.  Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…

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Photo of Viaggio al Mare MarzottoEVENTS

OIFE 2023 Youth Event

The OIFE Youth Event is an informal meeting for people with osteogenesis imperfecta.  The 2023 edition will be hosted by the Italian OI organization Associazione Italiana Osteogenesi Imperfetta on 7th-10th September 2023. Location: Villaggio al mare Marzotto, 44 Viale Oriente, 30016 Lido di Jesolo, Venice, Italy What can I expect at the OIFE Youth Event?…

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YOUTH

Welcome to Osteonopolis!

In Spring 2021 the Russian camp for OI-families organized by Fragile Children was under the motto “Osteonopolis”. The camp participants landed in ancient Greece. They were divided into groups with different political parties and tried their best in creating social programs. Then political candidates would present their programs in the elections and the winner would…

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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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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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