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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OIFE

Founding Fathers and Mothers

In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…

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MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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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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Screenshot from workshop on patient involvementCONFERENCES

Successful workshop on patient involvement

On Tuesday 18th of November Ingunn Westerheim (OIFE) & Tracy Hart (OIF) together hosted a workshop about patient involvement in research at the ICCBH Virtual Forum. The workshop had more than 50 participants from Europe, US, Canada and beyond. It included three talks about patient involvement from different perspectives as well as a constructive Q&A…

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Logo OIF 50th anniversaryEDUCATIONAL

OI TeleECHO Clinic Series

The Osteogenesis Imperfecta Foundation in the US recently announced the educational program OI TeleECHO Clinic Series. The goal is to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The program is a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes). This series uses Zoom videoconferencing, and will take place on…

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ICCBHCONFERENCES

Call for abstracts ICCBH Virtual Forum

ICCBH Virtual Forum: “Bone Fragility Disorders in Children” Abstract submission for the ICCBH Virtual Forum on Bone Fragility Disorders in Children is now open. The scientific programme and other details can be viewed on the meeting website. Time & venue: November 18-20th 2020 ONLINE. Abstract deadline: 1 October 2020 Abstract submissions and clinical cases are invited.…

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Logo OIF 50th anniversaryCONFERENCES

The OIF’s Young Investigator Symposium

The OI Foundation is seeking abstract submissions from young investigators working in the field of osteogenesis imperfecta (OI) and/or rare bone disease research to be presented at the 2020 OIF Young Investigator Symposium. Time Tuesday, November 17 from 5pm-8pm EST (23.00 – 02.00 CET). Abstract deadline Abstracts are due by October 1. More information on…

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