ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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CONFERENCES

Call for abstracts for IntOI 2020+1

IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…

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STORIES

Life as a “Shadow Child”

Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…

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RESEARCH

Norwegian registry for rare bone conditions

A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…

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EVENTS

WISHBONE DAY 2021: #OIStrong

May 6th is a special day for the OI Worldwide community! Wishbone Day is the International Day for Osteogenesis Imperfecta aimed to improve and boost awareness about OI. During last year’s OIFE Annual General Meeting many of the participants expressed a wish to create a more coordinated international approach and campaign for this International Awareness Day.…

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OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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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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Logo Brittle Bone SocietyMEMBERS

Rest in Peace Margaret Grant

We were very sad to receive the news about the passing of the founder of the Brittle Bone Society, dr. Margaret Grant. We send our condolences to her family and friends from OIFE and the international OI-community. You can write a Tribute or share a memory on a website dedicated to Dr. Margaret Grant MBE…

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EDUCATIONAL

Animation video about OI – now in English

Animation video explaining OI! Some of you might have seen the animation video that the Swiss OI-organization made to explain OI? From November 12th an edited version with English language and an international twist became available. This in addition to the previous versions in German and French. A big thank you to the Schweizerische Vereinigung…

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