eurrbone logoADVOCACY

EURR-BONE Final Meeting

On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…

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EVENTS

OIFE Youth Meeting 2023 in Italy!

We are happy to announce that the OIFE Youth Meeting will be hosted by As.It.O.I. - the Italian OI organization from the 7th to the 10th of September 2023. The location will be Jesolo, a stunning place by the seaside and near the beautiful city of Venice! A  4-day experience filled with fun, relaxation, and…
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iCAN logoADVOCACY

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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EVENTS

Join OIFE’s AGM 2022

Are you a member of one of OIFE’s member organizations? Then you can join our Annual General Meeting (AGM) on Zoom.  OIFE’s Annual General Meeting 2022 part 1 (the formal business part) will take place via Zoom on June 4th from 11-13PM Central European Time. The AGM provides an opportunity for the Executive Committee (EC)…

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Flyer announcing the OI2022 conference in Sheffield, UKEVENTS

Travel Grant for OI2022

Osteogenesis Imperfecta Federation Europe (OIFE), The Osteogenesis Imperfecta Foundation and The Brittle Bone Society (UK & Ireland) are offering a travel grant for the OI2022 conference in Sheffield, UK which takes place from Aug 30th – Sep 2nd 2022.  Healthcare professionals and researchers working in a low or middle-income country can apply to come to…

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EVENTS

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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EVENTS

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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