CONFERENCES

Balancing Life with OI – now on YouTube!

Most of the talks and presentations from OIFE’s topical meeting “Balancing life with OI” in Stockholm June 2023 are now available with English subtitles in OIFE’s Playlist on YouTube: https://youtu.be/UyeNZPRn0dw You can have auto texting in other languages, by clicking on settings. The various talks cover the causes, assessment, and management of pain in OI…

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CONFERENCES

Impressions from “Balancing Life with OI”

OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…

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logo IMPACT surveyMEDICAL

IMPACT survey – filling the knowledge gaps

The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community   The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…

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ADVOCACY

OIFE in Bologna

The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…

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CONFERENCES

OIFE Topical Meeting 2023 programme

The OIFE Topical Meeting 2023 programme is now available to view and download on our website. This 2-day international conference is aimed at anyone with an interest in osteogenesis imperfecta and other rare bone diseases. The focus of the meeting is on pain and its impact. What is the meeting about? The 2023 OIFE Topical…

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Sign workshopADVOCACY

ERN BOND Workshop on Patient Priorities

The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…

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Advertising image - what is the toolbox on pain and what should be in it?EDUCATIONAL

Toolbox on pain and OI

In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…

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call for abstractsCONFERENCES

Abstract Deadline March 6

On 9-10 June we will be organising a conference called "Balancing Life in OI" in Stockholm, on pain and its impact in OI and other rare bone conditions. We invite abstracts and case studies on any aspect of pain in OI and rare bone conditions including: 1. Pathophysiology and mechanisms of pain 2. Causes, assessment…
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