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…
Ca. 150 people gathered on Zoom on October 14th to hear an update on the different clinical trials that’s going on in OI at the moment. Lot’s of questions and interaction. Two of the trials are still recruiting: – The Losartan trial (adults) – The Evenity trial (children with OI) Are you or your child…
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…
Summary written by Taco van Welzenis, OIFE Honorary Member Due to the fast developments in the field, OIFE decided to organize another update on clinical trials after the first edition in 2023. An amazing number of 278 people from 55 countries (marked in blue) signed up for the OIFE Clinical Trial Update which took place…
“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…
We are happy that a potential new treatment for OI is getting closer. Many of you have heard about the Cosmic and Orbit trials and today April 30th 2024, it’s official – all patients needed have now been enrolled. “We would like to thank the OI community for its support, trust and participation as we complete…
On the 24th of October, OIFE hosted a webinar for the OI community about clinical trials and updates. 235 people from 52 countries signed up. Attendees were a mix of health professionals, scientists, OI clinicians, industry professionals, and individuals with OI and their family members. OIFE is excited to share this current OI study and…
As you may be aware, the company Ultragenyx is sponsoring a research study, titled Orbit, to determine the safety and efficacy of setrusumab (UX143), for the treatment of OI. The Phase 2 portion of this study was completed in February with 24 patients and they have announced the interim results. Click here to read the full…
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…
