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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ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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Ilustration of 3 soccer balls with text Survey of Physical Activity and Exercise in OIRESEARCH

Survey of Physical Activity & Exercise in OI

Who is behind the survey? OIFE and the OIF are assisting with the distribution of a survey developed by a project team supported by Care4BrittleBones. The team consist of professionals interested in increasing the knowledge about the physical well-being of individuals with Osteogenesis Imperfecta (OI). Project team Kathleen Montpetit, Occupational Therapist (retired), MSc OT, Montreal,…

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ADVOCACY

RARE2030 – Survey to shape future policy

We need your help! OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis…

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Photo of three female doctors. Photo text: Survey opportunity. Help orthopedic surgeons learn about what's important for people with OI.RESEARCH

Can you help OI-surgeons get wiser?

A group of orthopedic surgeons in the USA with extensive experience in treating OI have come together to learn even more about the patient experience. Please take a moment to complete this survey: https://www.surveymonkey.com/r/J9653VK Your participation will help these OI experts better understand the needs of people living with OI. A message from dr. Flanagan,…

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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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ADVOCACY

Can you help us create good registries?

Why do we need registries for OI? Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning…

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RESEARCH

Research Interview – “Pain and OI”

Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have…

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