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…
On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit: Oliver Semler Ingunn Westerheim Inger-Margrethe Stavdal Paulsen On December 14th we will attend the second half of the two half-day multi-stakeholder meeting. The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform…
