Male Person with dark hair and light blue Shirt giving a talkRESEARCH

New PhD: Chronic pain in adults with OI

New PhD in OI: Experience of Chronic pain in adults with OI Interview with Rubén Muñoz Cortés My name is Rubén Muñoz Cortés and I work as a psychologist at Fundación AHUCE. I am specialized in clinical psychology, and my primary role involves offering psychological therapy to individuals with osteogenesis imperfecta (OI) or other dysplasias,…

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EDITORIALS

When obstacles become opportunities

By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…

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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. 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 and…

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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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