OIFE’s 5th Topical Meeting “Balancing Life with OI” will take place in Stockholm, Sweden, from June 9-10 2023. The main topic of this international conference is pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. The scope will also cover other rare bone conditions. Anyone interested in the…
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…
The OIFE Youth Event is an informal meeting for people with osteogenesis imperfecta. The 2023 edition will be hosted by the Italian OI organization Associazione Italiana Osteogenesi Imperfetta on 7th-10th September 2023. Location: Villaggio al mare Marzotto, 44 Viale Oriente, 30016 Lido di Jesolo, Venice, Italy What can I expect at the OIFE Youth Event?…
In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta. The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…
Heavy snowfall didn’t stop osteogenesis imperfecta from being well represented at an educational seminar on challenges and possibilities in advanced therapies. The event was hosted on 13 March 2023 by Oslo University Hospital in Norway. Rebecca Tvedt Skarberg was on the organizing committee, Inger-Margrethe Stavdal Paulsen from Norsk Forening for Osteogenesis Imperfecta (NFOI) gave a talk about…
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…
An article called “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published recently in Orphanet Journal of Rare Diseases. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and…
