MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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MEDICAL

COVID-19 survey for people with OI

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community in the US and worldwide. The OIFE is supporting the project.  Help us know more! Please take a few minutes to complete this new survey today!…

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Photo of the backside of a skullMEDICAL

What is Basilar Invagination (BI)?

Through our peer groups on Facebook, we sometimes get in touch with people with OI who have symptoms of the rare condition Basilar invagination (BI) without being aware of what it is and what they should do about it. Because there is so little awareness about this rare but serious complication, we would like to…

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Photo of arm getting a vaccineMEDICAL

Are COVID-19 Vaccines safe?

We bring you the following message from European Medicines Agency (EMA): “The EMA needs many detailed studies to confirm that a vaccine is safe, provides adequate protection and is of suitable quality. As a public-health body safeguarding medicines in the European Union (EU), EMA will only approve a vaccine for COVID-19 after a thorough evaluation…

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MEDICAL

ECTS 2020 Digital Congress

European Calcified Tissue Society (ECTS) is a major community for researchers and clinicians in Europe working in the field of musculoskeletal diseases. Annual ECTS Congress brings together health and science professionals to exchange latest advances, challenges and controversies in bone and calcified tissues field. OIFE was represented by Lidiia Zhytnik (member of OIFE Medical Advisory…

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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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ADVOCACY

New affiliated members of ERN BOND

On August 31st the inclusion of Affiliated Partners to ERN BOND was finalized. 16 centres from 10 countries are now part of ERN BOND as affiliated partners (not full members). Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners should be ERN’s entry points as they improve the accessibility across the EU for patients…

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Photo of OI-expert Richard Kruse wearing a suit and a conference badge.MEDICAL

Interview with Dr. Kruse

Dr. Richard W. Kruse recently published a new book on surgery in OI. OIFE was one of the consultants in the writing of the book, to secure that the voices of people with OI were represented. But dr. Kruse is not only a writer. He’s a busy doctor involved in many different projects and activities…

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MEDICAL

Women’s health & OI

WOMEN’S HEALTH AT OIF CONFERENCE Did you know that Women’s health is one of the topics which will be covered at the upcoming online conference of the Osteogenesis Imperfecta Foundation? The speaker is Dr. Deborah Krakow, MD – Professor and Chair, Obstetrics and Gynecology, UCLA. The session is designed specifically for women over 18 who have…

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