EDUCATIONAL

OIFE in EUPATI Patient Expert Training Programme

Alessandra Tolaccia is representing OIFE at the EUPATI Patient Expert Training Programme. The EUPATI Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The certificate course is a mixture of online and face-to-face education modules over a 13-month period. April was…

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EDUCATIONAL

Patient Journey vs. Care pathways

Patient Journeys are service improvement tools that capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition. We were four people from OIFE who attended the webinar on patient journeys organized by EURORDIS on March 20th. You can find most…

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Girl with cast in wheelchairEDUCATIONAL

School kit for children with OI

Starting school or changing school is a big step in the life of a child or adolescent, and very likely a lot more if a have condition that makes their bones more fragile than their peers. A tool was created to ease these transitions as much as possible for students with OI. In collaboration with…

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GraveEDUCATIONAL

How do we deal with death & OI?

By Ute Wallentin, OIFE Social Network and Board member of the German OI-Association (DOIG) When OI-children or adults or members in general from our association die, how do we want to deal with the news of their death? And if they die (much too) young, what offers can we make to the surviving relatives? Ute…

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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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EDUCATIONAL

OIFE Educational Webinar 2022

The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…

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EDUCATIONAL

Join OIFE’s Educational Webinar June 4

We invite you to attend the annual OIFE Educational Webinar on June 4th from 13.30 – 17.00 CET (11.30 – 15.00 Universal Standard Time), which will take place online on Zoom. The webinar includes news about projects and activities from OIFE, patient advocacy education, news from OI-research & development and exchange and updates between OIFE’s…

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People demonstratingEDUCATIONAL

What is ableism and why does it matter to you?

Ableism turns disabled people into “others” – and helps non-disabled people stay “normal”. Through the hashtag #AbleismTellsMe different disabled people told their stories about discrimination. What exactly is Ableism? And what is the difference between that and hostility to disabled people? This is what Rebecca Maskos, from Germany, tries to explain in this article. It…

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