EDITORIALS

Safe & active in the OI community!

The last couple of months have been anything but easy. For all of us, this pandemic has arrived as some kind of storm, about which we heard something on the news, but never really thought would have arrived and jeopardized so much our daily, ordinary and chaotic days. I live in Italy, one of those countries where…

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ADVOCACY

SURVEY ON COVID-19 & RARE DISEASES

Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey. The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation…

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EDITORIALS

It’s a small world…

Fear is the path to the dark side, they said in Star Wars. Because fear can be used as a political tool to convince people to do their social distancing. But fear can also be destructive and cause anxiety. Especially for people who are part of the risk group of Covid-19. How tired we are…

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ADVOCACY

Discrimination in Critical Care Guidelines

The rare disease community raises alert over discrimination in #CriticalCare guidelines during COVID-19 pandemic. Read the statement from EURORDIS to see proposals for healthcare practitioners on how to avoid discrimination against people living with a rare disease and provide optimal care during #COVID19 OIFE supports EURORDIS in their view that critical care guidelines must be non-discriminatory and should be…

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MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 Are people with OI in the risk group?  We…

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OIFE

Virus Workout every Sunday

Are you stuck in your home because of COVID-19? Are you bored? Can’t go to the gym or swimming pool? Don’t worry, OIFE is inviting you to a virtual wheelchair aerobic session every Sunday! On March 29th we will try a moderate intensity workout. On April 5th we will repeat the high intensity workout. Time:…

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