Seminar on the rare condition Osteogenesis Imperfecta sets new standards for medical conferences

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More than 70 delegates from 21 different countries attended the ‘Soft Tissues & Soft Issues’ event, organized by the Norwegian OI‐organization (NFOI) together with the umbrella organizations OI-Norden and OIFE.

Reprinted and adapted for the IOF website with permission from OIFE

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-organization (NFOI) together with the umbrella organizations OI-Norden and the OIFE. The event took place in Oslo from September 16-18, 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-organizations. Organizers were pleased to gain assisted funding for the meeting from Alexion Pharmaceuticals.

Seminar talks focused on the physical challenges adults with OI face, excluding fractures being 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. Dr. Lars Folkestad (Denmark) who participated at the seminar praised the novel approach, 

Most conferences are by researchers for researchers about whatever the researchers find important. I have been to a lot of meetings, but never been to one where the patient organizations decided what were important topics, and primed the researchers with questions they wanted answered. This is a new way of thinking and it was a great experience.”

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 organizations across the world, in support of patient empowerment, updates on treatment, involvement in registries and research.

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About Osteogenesis Imperfecta (OI)

OI is also known as “brittle bones.” It is a genetic bone disorder characterized by fragile bones that break easily. A person is born with this disorder and is affected throughout his or her lifetime. As well as frequent fractured bones, people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. In more severe cases, restrictive pulmonary disease can occur. OI is caused by a genetic mutation that affects the body’s production of collagen, which can be found throughout the body, especially in a person’s bones and other tissues.

About OIFE

The Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association. Its membership consists of national and sub-national organizations which, in one way or another, support people living with Osteogenesis Imperfecta (OI). OIFE was established in 1993 by six founding OI societies as a non-profit organization and is registered as a charity in the Netherlands. www.oife.org

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