MEDICAL

Care pathways & Adult OI Networks in the UK

Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare…

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MEDICAL

COVID 19 & OI – survey results

Did you know that OIFE was one of the contributors to the Covid-19 and OI survey that the Brittle Bone Society initiated? Now the article has been published in Frontier’s magazine. Background: Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of…

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Flyer announcing the OI2022 conference in Sheffield, UKEVENTS

Travel Grant for OI2022

Osteogenesis Imperfecta Federation Europe (OIFE), The Osteogenesis Imperfecta Foundation and The Brittle Bone Society (UK & Ireland) are offering a travel grant for the OI2022 conference in Sheffield, UK which takes place from Aug 30th – Sep 2nd 2022.  Healthcare professionals and researchers working in a low or middle-income country can apply to come to…

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Logo Brittle Bone SocietyCONFERENCES

How to fill the knowledge gaps in OI

On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…

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Webinar Topaz & OI researchRESEARCH

Webinar: Topaz Trial & OI research

Come join us on June 8th for a webinar with an update about the TOPAZ trial and OI-research. The event is hosted by the university of Edinburgh and OIFE is one of the contributors together with the Brittle Bone Society. Register for free here Read more about the TOPAZ trial in the OIFE Magazine

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OIFE

Founding Fathers and Mothers

In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…

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MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 See also more resources about Covid19 in English from…

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MEMBERS

Happy 50th anniversary OIF!

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…

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