OIFE AGM 2015
A topical seminar covering the rare condition Osteogenesis Imperfecta - saw 73 delegates from 21 different countries attend the ‘Soft Tissues & Soft Issues’ event hosted and arranged by the Norwegian OI-organisation (NFOI) together with the umbrella organisations OI-Norden and the OIFE. The event took place in Oslo from September 16th – 18th 2015.
The seminar is thought to be the first of its kind covering the topic of OI and non skeletal issues. The participants consisted of a variety of healthcare professionals including doctors, nurses, physiotherapists, occupational therapists, psychologists and others. Among the contributors was Professor Francis Glorieux of the Shriners Hospitals in Montreal. 40 per cent of the participants were delegates from European OI-organisations. Organisers were pleased to gain assisted funding for the meeting from Alexion Pharmaceuticals.
UK Charity representatives from the Brittle Bone Society attended the event, specifically in the capacity of their role as active delegates to the Europe wide group OIFE. The Dundee based charity were particularly interested in the sessions centred on Adult care services as they will be undertaking a year long project in 2016 to help scope out an application bid for services for people in the UK. Chief Executive Patricia Osborne was particularly interested in the Netherlands Model and they will send healthcare representatives to look at those and services at UK based hospitals offering the latest in methods of care for Adults with OI to help in their application.
Seminar talks focused on the physical challenges adults with OI face, excluding fractures which is the most known consequence of OI. But OI can also involve challenges regarding soft tissue as well as lung, cardiac and gastric issues. This can cause pain and fatigue and other complications for people with OI. The goal was to increase the knowledge and encourage more research in non-skeletal issues as well as development of services for adults with OI. Examples from adult clinics in the Netherlands, Denmark and UK (Birmingham) were presented and well received. Another goal was to discuss how complications can be prevented by follow-up routines. During the final session a proposal of follow-up routines were presented by Dr. Lena Lande Wekre, based on the PHD “A Population-based Study of Osteogenesis Imperfecta in Adults – Clinical and social aspects”.
Delegates with OI themselves presented testimonies and joined a panel discussion where professionals could ask them about life as an adult with OI. There were several sessions that allowed discussion between people with OI and the different healthcare professionals. The seminar also covered news on research, registries and collaboration between researchers and patients.
The seminar was followed by an AGM for the Osteogenesis Imperfecta Federation Europe (OIFE) where new President Ms Ingunn Westerheim was unanimously elected to the Board. The OIFE is a member of EURORDIS and links with other patient organisations across the world, in support of patient empowerment, updates on treatment, involvement in registries and research.