MEDICAL

The systematic spiral

How clinical work, registries, research, guidelines and quality improvement are connected Interview with Lena Lande Wekre, M.D. in the Skeletal dysplasia team at TRS National Resource Centre for Rare Disorders, Norway Who are you and where are you currently working? My name is Lena Lande Wekre and I am a Medical Doctor in the Skeletal…

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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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RESEARCH

Norwegian registry for rare bone conditions

A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…

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ICCBHCONFERENCES

Call for abstracts ICCBH Virtual Forum

ICCBH Virtual Forum: “Bone Fragility Disorders in Children” Abstract submission for the ICCBH Virtual Forum on Bone Fragility Disorders in Children is now open. The scientific programme and other details can be viewed on the meeting website. Time & venue: November 18-20th 2020 ONLINE. Abstract deadline: 1 October 2020 Abstract submissions and clinical cases are invited.…

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Logo OIF 50th anniversaryCONFERENCES

The OIF’s Young Investigator Symposium

The OI Foundation is seeking abstract submissions from young investigators working in the field of osteogenesis imperfecta (OI) and/or rare bone disease research to be presented at the 2020 OIF Young Investigator Symposium. Time Tuesday, November 17 from 5pm-8pm EST (23.00 – 02.00 CET). Abstract deadline Abstracts are due by October 1. More information on…

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ADVOCACY

LAUNCH OF EURR-BONE

Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG). EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI…

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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…

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