ADVOCACY

OIFE supports EU4Health campaign

On August 4th the OIFE joined EURORDIS and signed the EU4Health campaign “Europe, Let’s Do More for Health”. The campaign calls for targeted and effective EU action to ensure that everyone is able to enjoy healthy lives in healthy environments. The European organizations who has joined EU4Health call for an EU leadership that respects EU…

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Bruno Van DijckOIFE

Bruno new 2nd Vice President

At the OIFE AGM 2020, which took place on Zoom on May 9th, we welcomed Bruno van Dijck as a new member of the OIFE Executive Committee (EC). Bruno was elected for four years as the new 2nd Vice President of OIFE. OIFE’s Youth Coordinator Stephanie knew Bruno already, but through the interview below, she’s…

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OIFE

OIFE & FACEBOOK DONATIONS

OIFE has recently succeeded in getting accepted for the Fundraising Tools in Facebook and our Vice President Dace immediately decided to use the birthday fundraiser tool. For her birthday she invited friends and family to fundraise to support the projects and the activities of OIFE. And thanks to 24 donations, she managed to raise almost…

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OIFE

OIFE MAB-meeting on Key4OI & EuRR-Bone

Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total…

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EVENTS

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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EVENTS

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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OIFE

YOUR #WISH4OI 

The aim with our #wish4OI campaign was to collect the wishes of the OI community to get to know what they wish there could be more knowledge and awareness about in the future about OI. It could be anything from treatments to policy work, from very basic to complicated issues you want to address or…

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EVENTS

#tuesday takeover

On May 5th 2020 OIFE will be the host of the periodical #tuesdaytakeover organized by Rare Revolution Magazine.   Rare Revolution Magazine  Rare Revolution Magazine gives a voice – and a platform – to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. Created by…

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EVENTS

Tell us your #wish4OI

Save the date! May 6th is Wishbone Day the International Day of OI celebrated all over the world by the OI communities to improve and boost the awareness around OI. We have seen many incredible ways to celebrate this day, some created by individuals and some guided by National organizations’ initiatives. As the international umbrella for…

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