Graphic data from the Impact surveyMEDICAL

Adult Health resource group

Interview with Eric Orwoll, Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine and Dr. Lars Folkestad, member of OIFE’s Medical Advisory Board Due to common interests in adults with OI, Prof. Eric Orwoll and Dr. Lars Folkestad identified researchers and clinicians who have worked on adult care and formed a…

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RESEARCH

Study: Voice and OI

Due to the phenomenon of the “higher pitched voice” described in the literature, the question arose in Katharina Böhm’s mind whether the voice was altered in OI. The aim of her study was to find out by means of voice analyses whether there are pathological changes in the voice sound in people with OI. We…

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CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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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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RESEARCH

The Hospital of No Surprises

The “Puppet theatre” study is a McGill ethically-approved research study aimed at optimizing the surgical experiences of children with Osteogenesis Imperfecta. The purpose of this study is to professionally produce an animated version of a children’s play written by one of our research assistants/artists titled “The Hospital of No Surprises”, and to create an accompanying…

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Geisman GrantRESEARCH

Apply now for the Geisman grant

The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI), or who have projects that will enable them to develop expertise in OI research. Applicant Requirements: Applicant must hold an MD, DDS, DO, or PhD, and be appointed at the level…

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oife flyer update clinical trial)EVENTS

OIFE Webinar: Update on Clinical Trials 2023

We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. GOAL & TARGET GROUP The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. The target group is anyone interested in OI-related research – both professionals and people…

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RESEARCH

Literature review: Fracture risk in adults with OI

Interview with Dr. Winnie Liu, Oregon Health and Science University (OHSU), Portland, Oregon, USA Dr. Winnie Liu is an adult endocrinologist and takes care of patients at Oregon Health and Science University (OHSU) located in Portland, Oregon. Her clinical and research interests are metabolic bone disease with a focus on OI after joining the BBDC (Brittle…

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Clara Isabel RodriguezRESEARCH

Stem Cells and cell therapy (TERCELOI Project)

In OIFE Magazine 2-2023, we interviewed Clara I. Rodríguez who is the group leader of Stem cells and Cell therapy laboratory at Biocruces Bizkaia Health Research Institute in Bilbao, Spain. Our laboratory focuses on the potential of human stem cells and their derivatives for the study of diseases and the development of new therapeutic strategies.…

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