MEDICAL

Adult Health Toolkit

NEW RESOURCE FOR ADULTS WITH OI Check out the new resource from our friends in the USA, which in our opinion must be the best thing since sliced bread: “The Adult Health Toolkit” made by the Osteogenesis Imperfecta Foundation is: “Information for Adults Living with OI, Their Families, and Medical Professionals” to help you navigate…

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CONFERENCES

OIFE Topical Meeting 2023 programme

The OIFE Topical Meeting 2023 programme is now available to view and download on our website. This 2-day international conference is aimed at anyone with an interest in osteogenesis imperfecta and other rare bone diseases. The focus of the meeting is on pain and its impact. What is the meeting about? The 2023 OIFE Topical…

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Photo of Viaggio al Mare MarzottoEVENTS

OIFE 2023 Youth Event

The OIFE Youth Event is an informal meeting for people with osteogenesis imperfecta.  The 2023 edition will be hosted by the Italian OI organization Associazione Italiana Osteogenesi Imperfetta on 7th-10th September 2023. Location: Villaggio al mare Marzotto, 44 Viale Oriente, 30016 Lido di Jesolo, Venice, Italy What can I expect at the OIFE Youth Event?…

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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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Photo of Ursula von der Leyen, European Commission PresidentADVOCACY

Call for European strategy on rare diseases

On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases.  The goal is to improve the lives of the 30 million European citizens living with a rare disease. The letter…

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Child hand in adults handMEDICAL

Child abuse & OI – from geneticist perspective

Interview with Professor Gerard Pals, biochemist (MSc) and geneticist (PhD) at the VU university hospital in Amsterdam, The Netherlands Who are you and what is your relationship to OI? I am a biochemist (MSc) and geneticist (PhD). In 1989 I started a diagnostic laboratory for DNA and protein testing of inherited diseases, including OI, at…

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Sofie and familyMEDICAL

Wrongly accused of child abuse

Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4 Who are you and what is your relationship to OI? My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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CONFERENCES

Registration is open – OIFE Investigator Meeting

The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from our Medical Advisory Board invite you to register for the very first virtual European Investigator Meeting for osteogenesis imperfecta (OI), which we hope will become an annual tradition. The event will take place on Zoom November 18th 2022, 2 PM – 7…

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