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…
An amazing number of 278 people from 55 countries (marked in blue on the map) signed up for the OIFE Clinical Trial Update which took place October 22nd, showing that OIFE’s outreach is growing year by year. In the end we were around 130 participants who received lots of information and updates from the following…
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…
We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. GOAL & TARGET GROUP The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. The target group is anyone interested in OI-related research – both professionals and people…
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…
The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…
In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about research on the potential therapy Fresolimumab (TGFb). Who are you and what is your relationship to OI? I am a pediatrician and clinical geneticist who has engaged in basic, translational, and clinical research in skeletal…
Our Annual General Meeting (AGM) 2021 took place on 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 included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…
