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.…
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…
On August 31st the inclusion of Affiliated Partners to ERN BOND was finalized. 16 centres from 10 countries are now part of ERN BOND as affiliated partners (not full members). Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners should be ERN’s entry points as they improve the accessibility across the EU for patients…
A group of orthopedic surgeons in the USA with extensive experience in treating OI have come together to learn even more about the patient experience. Please take a moment to complete this survey: https://www.surveymonkey.com/r/J9653VK Your participation will help these OI experts better understand the needs of people living with OI. A message from dr. Flanagan,…
Some people felt that the project Key4OI were missing some important aspects of adult health in OI, when the first set of outcome measures in OI was developed. Now the project wants to develop an additional, supplementary set of outcome measures for 4 new areas. Ears, teeth, lungs and heart Key4OI wants to develop…
OIFE is looking for someone who could represent us at the Brussels Rare Disease Week 2021. Would you like to apply for the position as our representative? When? Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021 in Brussels, organized in the lead-up to Rare Disease Day 2021 (28 February). What?…
On August 21st 2020 it was 50 years since our partner organization in the USA – Osteogenesis Imperfecta Foundation (OIF) – was founded. On this page, you can see memories from the five decades the organization has been active. And the same day, Inger-Margrethe S. Paulsen (chair of NFOI) and Ingunn Westerheim accidentally discovered a…
On August 4th the OIFE joined EURORDIS and signed the EU4Health campaign “Europe, Let’s Do More for Health”. The campaign calls for targeted and effective EU action to ensure that everyone is able to enjoy healthy lives in healthy environments. The European organizations who has joined EU4Health call for an EU leadership that respects EU…
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…
