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The iCAN Summit 2022

By Dace Liepina, former OIFE Vice President The iCAN (International Children’s Advisory Network) Summit 2022 took place in Lyon, France. It was an event for young people aged 12 to 19 from all around world to meet, exchange ideas and learn more about rare diseases and children’s rights, health and data protection. Many of the…

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OIFE 2022 Wishbone Day campaign: #1voice4OI

Every year the OI community looks forward to the 6th of May to celebrate Wishbone Day. You can wear something yellow and help raise awareness of OI. The aim of this day is to create awareness about the varied lives of people with OI and the challenges and solutions to living full and happy lives.…

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OIFE in panel debate on ERNs

The company EuropaBio has invited the OIFE President to represent the patient organizations at the upcoming Patient Bio-Forum on October 19, 2021 (11.00-12.30 CEST). In the upcoming edition of the forum, the focus will be on the challenges and opportunities of the 24 European Reference Networks (ERNs), which include “our own network” – ERN BOND…

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Text about OIFE AGM and photo of a round table with people around. Four colorful bubbles to symbolize discussion on the table.EVENTS

Register for OIFE AGM 2021!

Our Annual General Meeting (AGM) 2021 will take place via Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET which will include: – Prelaunch of the IMPACT survey – News from research…

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Poster for OIFE Wishbone Day partyEVENTS

#OIStrong OIFE party!

Come party with us! Come party with us to celebrate that another Wishbone Day has created awareness about OI around the globe. Friday May 7th in the evening (European time) you’re all invited to a special #wishboneday and #OIstrong celebration on zoom! The informal party will include OI-trivia, games, awards, and music. What kind of Awards will there be? We…

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WISHBONE DAY 2021: #OIStrong

May 6th is a special day for the OI Worldwide community! Wishbone Day is the International Day for Osteogenesis Imperfecta aimed to improve and boost awareness about OI. During last year’s OIFE Annual General Meeting many of the participants expressed a wish to create a more coordinated international approach and campaign for this International Awareness Day.…

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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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OIFE YOUTH EVENT CANCELLED

Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in…

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OIFE AGM on Zoom – a success

Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas. Our…

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