A young girl from Asian origin sitting in a manual wheelchair.OIFE

New OIFE Youth Coordinator

Interview with Simey Truong, Germany My name is Simey Truong. I am 26 years old and have OI type 3, so I am bit short (I am only 1.12m tall) and sitting in a wheelchair. During my childhood I had a lot of fractures, but they didn’t stop me from experiencing a lot. I’m a…

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[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]STORIES

10 tips to parents of children with OI

Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…

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YOUTH

Youth Weekend Belgium

From May 5 to May 8, 2022 the youth weekend will take place in Bruges, Belgium. Registration is open now and will close February 1st: https://forms.gle/tGH2ZeMkPyPVc8o89 Don’t hesitate to contact the organizers on youth@zoi.be if you have questions!

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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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MEMBERS

Around the World Youth Event

The OIFE and the Brittle Bone Society are delighted to host the 2021 Youth Event (digital version). The theme is “Around the World!” From South America to Australasia. Along with a small team of travel mates, you will face challenges in each country, earning Travel Credits to purchase your onward journeys. Which team will cover…

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YOUTH

OIFE Youth Event moved to 2022

OIFE Youth Event was supposed to take place in Poland in August 2020. It was later moved to August 2021. Because of the very uncertain situation around vaccines in Europe and travel restrictions due to Covid-19, the OIFE Executive Committee has decided to move the OIFE Youth Event to Poland in August 2022. This in…

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ADVOCACY

OIFE Youth at Rare Disease Week

Did you know that the first Brussels Rare Disease Week starts tomorrow? #RareDiseaseWeek brings together Members of the European Parliament (MEPs) and rare disease patient advocates from across Europe to exchange ideas and ensure fairer and more inclusive policies for people with #rarediseases. OIFE has three young people representing their countries at Rare Disease Week…

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EVENTS

OIFE Youth Night

Saturday 13th of June 2020 there will be an informal chat session for people with OI (age 18-35) & friends from all over the world on Zoom! You don’t want to miss this. Will you join us? Questions? Send an email to youth@oife.org Register here before Saturday: https://bit.ly/37iiwfh

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