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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ADVOCACY

The European Registry for Rare Bone & Mineral Conditions (EuRR-Bone)

Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…

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Photo of a Mac showing a video of people in wheelchairs doing cardio exerciseOIFE

JOIN OIFE’S FREE VIRUS WORKOUT!

A group of volunteers from OIFE are inviting you to join a FREE virtual wheelchair aerobic session/cardio exercise every Sunday and Wednesday on Zoom! What it is: People with OI doing exercises together on Zoom for 30-45 minutes Instructions from seated/wheelchair using instructors from videos on YouTube (shared screen on Zoom) An informal offer from…

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EVENTS

OIFE in panel debate on ERNs

The company EuropaBio has invited the OIFE President to represent the patient organizations at the upcoming Patient Bio-Forum on October 19, 2021 (11.00-12.30 CEST). In the upcoming edition of the forum, the focus will be on the challenges and opportunities of the 24 European Reference Networks (ERNs), which include “our own network” – ERN BOND…

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RESEARCH

Research project need people between 18 and 25

Professor Kara Ayers from the US have three children of her own. Now she’s working together with the researcher Leanne Baird, who’s a genetic counseling student, to find out more about the role OI plays when young people are making future decision about having children. Kara and her student need young adults with OI aged…

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Logo of EURORDISEDUCATIONAL

Apply for EURORDIS Summer School!

Have you seen that applications for the 2022 EURORDIS Summer School are open? OIFE have at least five people who attended Summer School before and who graduated as patient experts. Take your patient advocacy to the next level, and learn with EURORDIS – European Rare Diseases Organisation about an exciting range of topics – including…

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EDUCATIONAL

Why measure quality of life and how?

On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX  and explored the ways to…

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OIFE

We did it together!

The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…

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