Conference flyerRESEARCH

Drug repurposing event in Barcelona

On the 6th and 7th of March 2024, the international conference iDR24 took place in the Modernist Campus at Sant Pau Hospital in Barcelona (Spain), organized by REMEDi4ALL, Beacon for Rare Diseases and MeRIT. More than 50 speakers from across this broad range of disciplines gathered to deep-dive into the evolving landscape of drug repurposing.…

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RESEARCH

New PhD: Extra skeletal complications in OI

New PhD in OI – Extra skeletal complications in OI Interview with Silvia Storoni Who are you & what is your relationship to OI? I am Silvia Storoni, a physician specializing in internal medicine with a particular interest in endocrinology. A few years ago, I came in contact with Dr. Marelise Eekhoff and Dr. Dimitra…

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STORIES

Artist with OI: Jon Wos

Jon Wos was born in Wisconsin in 1981. He was diagnosed with OI at birth. Though this condition limited his physical ability, it heightened his sensitivity to the world around him, and, out of his love of creation, Jon began drawing as a very young child. When Jon was a sophomore in college, he won…

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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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logo IMPACT surveyRESEARCH

First article from IMPACT Survey published

The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives. On March 21st the first article based on results from the IMPACT Survey was published in Orphanet Journal: “The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and…

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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

Remedi4All – Meeting on OI in Bologna

The Remedi4All consortium & the MOI-A Trial (Losartan) Information provided by Claudia Fuchs, EURORDIS What is Remedi4All? The EU-funded multidisciplinary consortium REMEDi4ALL (Repurposing Medicines for All) has an ambition to establish a European research and innovation eco-system that facilitates fast and cost-effective patient-centric development and implementation of repurposed medicines, meeting high unmet medical needs in…

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ADVOCACY

JARDIN – The new EU Joint action

EU Joint Action on Integrating ERNs* into National Health Systems (JARDIN) *ERN: The key European network leveraging diagnosis, research, and treatment for rare diseases It was at the formal kick-off meeting in Brussels in March 2024 where the purpose and ambitions of JARDIN were further detailed, and where the European Commissioner for Health and Food Safety,…

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Logos of member organizations of ESEOIFE

OIFE Affiliated Member of ESE

The OIFE has recently been accepted as a Patient Advocacy Group (PAG) affiliated member of the European Society of Endocrinology (ESE). ESE see this as a two-way partnership, since PAGs play an essential role in ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and…

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