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…
On November 30th OIFE was represented at an interactive meeting about Orphan Drugs hosted by the European Medicines Agency (EMA). Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of rare diseases. There are currently two designated orphan drugs being investigated in OI, the most known being setrusumab from Mereo Biopharma. Products for…
Each year all delegates are invited to the Annual General Meeting (AGM). Anyone from our member organizations can attend the AGM. In addition OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited. At the AGM the EC accounts for OIFE’s activities in the past year, future…
Why do we need registries for OI? Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning…
