Interview with Liana la Forgia, volunteer and a member of the scientific board of A.C.A.R. Aps, the Italian patient association for Multiple Osteochondromas (MO) OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on…
The OIFE Topical Meeting 2023 programme is now available to view and download on our website. This 2-day international conference is aimed at anyone with an interest in osteogenesis imperfecta and other rare bone diseases. The focus of the meeting is on pain and its impact. What is the meeting about? The 2023 OIFE Topical…
The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…
On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases. The goal is to improve the lives of the 30 million European citizens living with a rare disease. The letter…
OIFE is a member of the European Rare Bone Forum (ERBF). A while ago they initiated a project to try to get a better overview of the unmet needs in rare bone conditions – especially regarding research & development: https://rarebone.org/news-rare-bone-diseases/projects/ OIFE promised to support the ERBF project a long time ago – but unfortunately some of…
On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit: Oliver Semler Ingunn Westerheim Inger-Margrethe Stavdal Paulsen On December 14th we will attend the second half of the two half-day multi-stakeholder meeting. The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform…
The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…
A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…
We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…
