The European Conference on Rare Diseases (ECRD) was originally planned to take place in Stockholm in May. Because of the Corona virus, the conference was moved online to May 14th and 15th, which made it possible for more people from OIFE to attend. Five people represented OIFE specifically and you can read about their experiences…
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…
EuRR-Bone is launched! The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care…
Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG). EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI…
Taco van Welzenis represented OIFE at the videoconference in the MEDEV-MOCA-meeting which took place on May 26th. The setrusumab project of Mereo Biopharma was the topic (Mereo Biopharma). BPS-804 (setrusumab) is a fully human monoclonal antibody designed to inhibit sclerostin, thereby improving bone strength and therefore reduce fractures in patients with OI. It has been…
On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…
The Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. Rare2030 is a two…
On May 13th OIFE president Ingunn represented OIFE at the Annual General Meeting of EURORDIS – European Rare Diseases Organisation on Zoom, which was scheduled to take place in Stockholm followed by the ECRD-conference. We approved reports and voted for future plans, which includes many important initiatives, that will affect the lives and situations of…
Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey. The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation…
