EDUCATIONAL

EURORDIS DIGITAL SCHOOL

Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their…

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A blue book cover with the title "Osteogenesis Imperfecta - A Case-Based Guide to Surgical Decision Making and Care".MEDICAL

NEW BOOK ON SURGERY IN OI

Dr. Richard E. Kruse from Wilmington, US recently published a new book on surgery in OI. OIFE was one of the consultants in the writing of the book, to secure that the voices of people with OI were represented. The book will help guide decision-making in surgery using biologic and surgical principles to assist the…

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CONFERENCES

OI2020 MOVED TO 2021

The 14th International Conference on Osteogenesis Imperfecta (OI2020) scheduled for September 5th – 8th 2020 in Sheffield, UK, will be postponed to September 1st – 4th in 2021. We hope to see you all in Sheffield in 2021!

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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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EVENTS

OIFE Youth Night

Saturday 13th of June 2020 there will be an informal chat session for people with OI (age 18-35) & friends from all over the world on Zoom! You don’t want to miss this. Will you join us? Questions? Send an email to youth@oife.org Register here before Saturday: https://bit.ly/37iiwfh

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EDUCATIONAL

TeleECHO RARE BONE DISEASES

Check out the TeleECHO series on rare bone diseases, which is a mix of lectures and case discussions. Previous sessions can be watched online, including: – Genetic Testing in the Diagnosis of Rare Bone Disease – OI Dominant vs Recessive: Impact on Treatment – Non-Accidental Trauma Link to the TeleECHO page of the OI Foundation…

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ADVOCACY

OIFE at MEDEV-MOCA-meeting

Taco van Welzenis represented OIFE at the videoconference in the MEDEV-MOCA-meeting which took place on May 26th. The setrusumab project of Mereo Biopharma was the topic (Mereo Biopharma). BPS-804 (setrusumab) is a fully human monoclonal antibody designed to inhibit sclerostin, thereby improving bone strength and therefore reduce fractures in patients with OI. It has been…

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ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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ADVOCACY

RARE 2030 Scenarios

The Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. Rare2030 is a two…

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