On December 29th we learned from announcements from the companies Ultragenyx and Mereo Biopharma that the clinicals trials Orbit and Cosmic to failed to meet their main endpoint, which was reduced number of fractures in children with OI. The Cosmic and Orbit trials There are a lot of clinical trials investigating different therapies in OI…
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…
Written By Michael Stewart On November 15, 2024, the Osteogenesis Imperfecta Federation Europe (OIFE) hosted its third virtual European Investigator Meeting. This event brought together researchers, clinicians, patient representatives, and industry professionals from Europe and beyond, all dedicated to advancing osteogenesis imperfecta (OI) research. The meeting aimed to highlight new OI research, facilitate collaboration between…
“We feel informed, motivated and supported!” Background Through our activities the last couple of years, we have realized that our member organizations are struggling more and more with various challenges. These include knowledge of and strategies concerning communication, fundraising, advocacy, recruitment of new members and board members. It was the view of the OIFE Board…
The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…
Are you 18 years or older and do you have OI? Or are you the parent/caregiver of someone aged 0-17 with OI? Are you able to read and write English well? Then OIFE and our collaborators are looking for your help! The pharma company Ultragenyx is developing a new treatment for OI. To test the…
The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
