RESEARCH

Help the ERBF!

OIFE is a member of the European Rare Bone Forum (ERBF). A while ago they initiated a project to try to get a better overview of the unmet needs in rare bone conditions – especially regarding research & development: https://rarebone.org/news-rare-bone-diseases/projects/ OIFE promised to support the ERBF project a long time ago – but unfortunately some of…

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OIFE

New Pain and OI survey – Deadline April 1

The OI Foundation and the OIFE have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and…

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OIFE

OIFE Leadership Meeting 2023

On January 23rd the member organizations of OIFE were invited to the OIFE Leadership Meeting 2023. The purpose of the meeting was to inform the organizations about events and activities going on in the OIFE. The agenda included the following topics: News from OIFE incl. clinical trials Launch of OIF & OIFE pain survey EuRR-Bone…

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EVENTS

OIFE Youth Meeting 2023 in Italy!

We are happy to announce that the OIFE Youth Meeting will be hosted by As.It.O.I. - the Italian OI organization from the 7th to the 10th of September 2023. The location will be Jesolo, a stunning place by the seaside and near the beautiful city of Venice! A  4-day experience filled with fun, relaxation, and…
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RESEARCH

WEBINAR ON FUNDING OPPORTUNITY

December 15th OIFE was represented at a webinar organized by the European Joint Programme on Rare Diseases (EJP RD) together with several OI professionals. The webinar was about their new call focused on “Natural History Studies addressing unmet needs in Rare Diseases”. If you know about researchers who would be interested in collaborating on an…

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ADVOCACY

The voice of children with OI

Interview with Jenny Wang, Shriners Hospitals for Children (SHC) – Canada and Khadidja Chougui, PhD candidate in clinical child and adolescent psychology at Université de Montréal, Canada Jenny Wang: My name is Yi Wen (Jenny) Wang, and I graduated from McGill University with a Bachelor of Science Nursing degree in 2019 and a Master of…

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MEDICAL

HR-pQCT: A revolution in bone imaging

Interview with Bettina Willie, Professor at McGill University and Shriners Hospital for Children in Montreal, Canada Who are you and what is your relationship to OI? I am Bettina Willie, and grew up in Utah, US. I earned a doctoral degree in Bioengineering from the University of Utah and I did my first postdoctoral training…

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