RESEARCH

The OIFE Clinical Trial Update

On the 24th of October, OIFE hosted a webinar for the OI community about clinical trials and updates. 235 people from 52 countries signed up. Attendees were a mix of health professionals, scientists, OI clinicians, industry professionals, and individuals with OI and their family members. OIFE is excited to share this current OI study and…

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EDUCATIONAL

OIFE Educational Webinar 2022

The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…

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BOOSTB4 logoMEDICAL

Announcement on the clinical trial BOOSTB4

In Sweden, the Karolinska Institutet and the Karolinska University Hospital are leading the academic clinical trial BOOSTB4 where we are looking for subjects who have a diagnosis of OI Type III or severe Type IV with a specific collagen mutation. The aim of the clinical trial is to study the safety and efficacy of the…

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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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RESEARCH

BOOST2B – stem cell trial in India

Dr. Madhuri’s team starts stem cell therapy in children in India We are pleased to inform you that we have initiated the stem cell therapy for children with Osteogenesis imperfecta under the Indo – Swedish collaboration, funded by DBT, India and VINNOVA, Sweden at Christian Medical College, Vellore. We have treated a patient severely affected…

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Tellef laughing at a beachRESEARCH

BOOSTB4 – stem cell therapy in OI

Interview with Anne Siqveland and Nicolai Wendt (parents of Tellef, 1 year old) Who are you and what is your relationship to OI? We are a Norwegian family of four, Anne (36), Nicolai (34), Edvard (4) and Tellef (1). Tellef was prenatally diagnosed with OI and his multiple fractures and mutation of COL1A2 gene place…

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EVENTS

OIFE AGM ON ZOOM MAY 9TH

Each year all delegates are invited to the Annual General Meeting (AGM). Anyone from our member organizations can attend the AGM. In addition OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited. At the AGM the EC accounts for OIFE’s activities in the past year, future…

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EDITORIALS

The time is now

For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…

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