By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…
In Norway, one of the most famous court cases is called the Rødseth-case. In 1981 a 19-year-old father was accused of child abuse and causing his baby girl’s death. He was sentenced to 2,5 years in prison because his five months old daughter had bruises and a fractured leg. The Supreme Court reduced the sentence…
I was seventeen the first time I attended an educational course about OI. It was primarily a course for adults of small children with OI, but Rebecca and I were nerdy enough to be interested in genetics, collagen and symptoms when we were 17, so we registered in any case. And it was at this course…
OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…
Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…
A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020. “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…
It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning nightmare. Needing help with most of the practical stuff because of my disability, doesn’t make it any better. For every box that needs to be moved or carried, every lamp that…
