Photo of a Mac showing a video of people in wheelchairs doing cardio exerciseOIFE

JOIN OIFE’S FREE VIRUS WORKOUT!

A group of volunteers from OIFE are inviting you to join a FREE virtual wheelchair aerobic session/cardio exercise every Sunday and Wednesday on Zoom! What it is: People with OI doing exercises together on Zoom for 30-45 minutes Instructions from seated/wheelchair using instructors from videos on YouTube (shared screen on Zoom) An informal offer from…

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CONFERENCES

OIF Investigator Meeting

Summary by Ingunn Westerheim, Dr Oliver Semler and Dr Lars Folkestad The OIF investigator Meeting is normally held in Chicago, but took place online on April 15th 2021. OIF Investigator Meeting The program chair this year was Dr Deborah Krakow who is Professor and Chair of the Department of Obstetrics and Gynecology at UCLA. This…

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EDITORIALS

More than just a survey!

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…

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EuRRbone logoRESEARCH

Provide OI Data to e-Rec !

The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…

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MEDICAL

A Quick jab and a glimpse of light

In Denmark some younger people with OI were prioritized to receive the COVID-19 vaccine. Read about the experiences from Jacob below.  Text written by Jacob Ø. Wittorff, member of DFOI All it took was a quick jab, and then it was over. I got my COVID-19 vaccine on a cold but sunny afternoon in January.…

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YOUTH

OIFE Youth Event moved to 2022

OIFE Youth Event was supposed to take place in Poland in August 2020. It was later moved to August 2021. Because of the very uncertain situation around vaccines in Europe and travel restrictions due to Covid-19, the OIFE Executive Committee has decided to move the OIFE Youth Event to Poland in August 2022. This in…

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Photo of arm getting a vaccineMEDICAL

Are COVID-19 Vaccines safe?

We bring you the following message from European Medicines Agency (EMA): “The EMA needs many detailed studies to confirm that a vaccine is safe, provides adequate protection and is of suitable quality. As a public-health body safeguarding medicines in the European Union (EU), EMA will only approve a vaccine for COVID-19 after a thorough evaluation…

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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 See also more resources about Covid19 in English from…

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ADVOCACY

Covid-19 Helpline in Orphanet Journal

Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…

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