Did you know that OIFE was one of the contributors to the Covid-19 and OI survey that the Brittle Bone Society initiated? Now the article has been published in Frontier’s magazine. Background: Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of…
Interview with Robert A. Sandhaus, MD, PhD, FCCP, respirologist at National Jewish Health in Denver, Colorado Who are you & what is your relationship to OI? I’m Robert A. Sandhaus, MD, PhD, FCCP, although my patients call me Dr. Sandy. I’m a respirologist at National Jewish Health in Denver, Colorado where I lead a team…
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…
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…
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…
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)…
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.…
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…
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…
