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…
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 Miguel R. Molina, member of OIFE’s Medical Advisory Board Miguel R. Molina from our Medical Advisory Board represented OIFE at the meeting of the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) in Amsterdam on November 23rd 2023. The European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA)…
The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) have launched an initiative to transform how clinical trials are initiated, designed, and run. This initiative, accelerating Clinical Trials in the EU (ACT EU), aims to further develop the European Union as a focal point for clinical research, promote…
Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…
November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…
The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey. Written by…
We bring you the following message from European Medicines Agency (EMA): “The EMA needs many detailed studies to confirm that a vaccine is safe, provides adequate protection and is of suitable quality. As a public-health body safeguarding medicines in the European Union (EU), EMA will only approve a vaccine for COVID-19 after a thorough evaluation…
The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 See also more resources about Covid19 in English from…
