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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MEMBERS

Around the World Youth Event

The OIFE and the Brittle Bone Society are delighted to host the 2021 Youth Event (digital version). The theme is “Around the World!” From South America to Australasia. Along with a small team of travel mates, you will face challenges in each country, earning Travel Credits to purchase your onward journeys. Which team will cover…

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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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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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Ilustration of 3 soccer balls with text Survey of Physical Activity and Exercise in OIRESEARCH

Survey of Physical Activity & Exercise in OI

Who is behind the survey? OIFE and the OIF are assisting with the distribution of a survey developed by a project team supported by Care4BrittleBones. The team consist of professionals interested in increasing the knowledge about the physical well-being of individuals with Osteogenesis Imperfecta (OI). Project team Kathleen Montpetit, Occupational Therapist (retired), MSc OT, Montreal,…

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Poster for OIFE Wishbone Day partyEVENTS

#OIStrong OIFE party!

Come party with us! Come party with us to celebrate that another Wishbone Day has created awareness about OI around the globe. Friday May 7th in the evening (European time) you’re all invited to a special #wishboneday and #OIstrong celebration on zoom! The informal party will include OI-trivia, games, awards, and music. What kind of Awards will there be? We…

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LatinAmericaCONFERENCES

Latin-American OI Conference

For the second year in a row the Latin American organizations are coordinating a joint event in connection to Wishbone Day. The Chilean OI Foundation (Fundación de Osteogénesis Imperfecta Chile FOICH) is one of the organizers. All Spanish speaking people interested in OI are welcome to follow the 2nd meeting of OI-Organizations of Latin America.…

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Chronic pain in OIMEDICAL

Do you have knowledge on pain & OI?

OIFE is interested in getting in touch with professionals (PTs, OTs, psychologists, medical doctors, researchers, pain specialists etc) who have experience/knowledge about pain & pain management in OI (or related bone diseases). We are considering a mini conference and/or project related to pain & OI and we are interested in getting in touch with people…

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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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