To celebrate Rare Disease Day, the pharmaceutical company Mereo Biopharma invited Ferre Castrel and Martijn Dillen from Belgium to its headquarters in London to talk about their lives with OI. OIFE Magazine reached out to them to learn about the experience. Hi guys, thanks for doing this interview! Can you briefly introduce yourselves? Ferre: “Hello!…
On 24 February 2025 in Brussels – EURORDIS hosted their Black Pearl Award show, where they announced the final winners of the 14th edition of the Black Pearl Awards, celebrating the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease. Stephanie Claeys from the OIFE Board was invited as a guest…
The year 2024 is history – and it will be a year to remember with pride for the OIFE. Thanks to a growing number of dedicated volunteers, we were represented in many different conferences and events during the year – both face to face and online. We co-hosted the big Remedi4All conference in Bologna in…
Dear members of the international OI-community! In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…
EURORDIS ’Reframe Rare’ Policy Event On February 18th at the European Parliament EURORDIS – European Rare Diseases Organisation was relaunching the Network of Parliamentary Advocates for Rare Diseases, made up members of parliament (MEPs) advocating to improve the lives of the 30 million people with rare diseases in Europe. The EURORDIS ’Reframe Rare’ Policy Event…
In 2021 Jon-Kristian (12) will be one of the faces of Rare Disease Day – an annual international awareness day celebrated on the last day of February. Get to know all the faces of #RareDiseaseDay 2021 on this webpage. Jon-Kristian lives in Bergen, Norway. He loves doing e-sport and playing board games with his family.…
February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…
