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…
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…
This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation…
On February 19th 2020 OIFE was again represented at an EURORDIS event in Brussels. Vice President Dace Liepina participated at the 29th EURORDIS Round Table of Companies Workshop “How to teach an old medicine new tricks – The importance of repurposing medicines for patients”. The meeting is primarily for pharma companies, but also open for…
Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…
