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…
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…
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.…
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…
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…
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…
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.…
