ADVOCACY

Save the European Health NGOs!

Large European health NGOs like EURORDIS – European Rare Diseases Organisation and European Patients’ Forum play a pivotal role in advocating for and communicating the needs of the most vulnerable in society, whilst continually pressing for greater action in health policy at the EU level. OIFE totally support their work to restore the operating grants…

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STORIES

OI & resilience

Some say that people with OI learn resilience from an early age. Shani Dhanda from the UK is featured in a film about people with resilience. She was one of six millennials interviewed and filmed from around the world to bring to life—through her personal story, the key theme from the survey – resilience. Resilience…

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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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STORIES

Pride & OI

Nikita has a rare form of OI, immigrant background and came out as queer one year ago. She’s now one of the faces of an awareness campaign about being queer and disabled in Norway. Nikita says she’s missing more knowledge about disability and sexuality from teachers and general practitioners. Photo shows Nikita in a PRIDE-parade…

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OIFE

OIFE AGM 2021

Our Annual General Meeting (AGM) 2021 took place on Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…

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Text about OIFE AGM and photo of a round table with people around. Four colorful bubbles to symbolize discussion on the table.EVENTS

Register for OIFE AGM 2021!

Our Annual General Meeting (AGM) 2021 will take place via Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET which will include: – Prelaunch of the IMPACT survey – News from research…

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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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CONFERENCES

Call for abstracts for IntOI 2020+1

IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…

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