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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ADVOCACY

ERN Exchange Programmes

We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…

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ADVOCACY

Covid-19 Helpline in Orphanet Journal

Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…

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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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Teaser for ICCBH Virtual ForumCONFERENCES

Save the date – ICCBH Virtual Forum!

ICCBH Virtual Forum: Bone Fragility Disorders in Children From 18th – 20th of November 2020 the International Conference for Children’s Bone Health (ICCBH) will host a virtual forum about bone fragility disorders in children, including sessions about osteogenesis imperfecta (OI). OIFE is one of the collaborators and contributors in the scientific programme. What is the…

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CONFERENCES

Rare Bone Disease Workshop

The Bone Research Society (BRS) is one of the largest national scientific societies in Europe dedicated to clinical and basic research into mineralised tissues, and is the oldest such society in the world. Meetings are held annually, attracting a wide audience from throughout the UK and beyond. The presentations are traditionally balanced between clinical and…

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ADVOCACY

Data strategy for the ERNs

EuRR-Bone is launched! The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care…

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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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