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 Are people with OI in the risk group?  We…

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MEDICAL

Key4OI: An Outcome measurement set

For the last 2 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project was to develop a core outcome set for OI, children and adults. The focus is on: Outcomes that are relevant for most people with OI, worldwide, througout a life time. Input was provided…

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MEDICAL

14th ISDS Meeting in Oslo, Norway

The 14th International Skeletal Dysplasia Society (ISDS) meeting took place in Oslo, Norway from the 11th -14th September 2019. OIFE was not present, but we asked Dr. Antonella Forlino (see photo in report below), who’s a member of OIFE’s Medical Advisory Board to report back from the sessions that were most interesting for OI. On…

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MEDICAL

New video explaining OI

Check out the educational video about OI that the Swiss OI-organization Schweizerische Vereinigung Osteogenesis Imperfecta has created. The video explains the basics about OI as a collagen defect, diagnosis and treatment. It’s available in 2 languages: German: https://youtu.be/i44KElsuaPs French: https://youtu.be/GVZ_L1No7pg

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MEDICAL

OIFE at MOCA-meeting

The European Medicines Agency and EU healthcare payers continued their cooperation this week at a meeting in Diemen, the Netherlands, to help improve timely and affordable access for patients to new medicines. Margriet Crezee from the Netherlands represented OIFE to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines,…

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CONFERENCES

Video lecture BI

One of the invited speakers at See, Hear, Smile was Suken A. Shah from Wilmington, Delaware, USA who gave a talk about basilar invagination (BI). Unfortunately dr. Shah could not come all the way to Latvia, so the talk was given via a video lecture. The video lecture of Dr. Suken A. Shah’s talk about…
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MEDICAL

CPMS Platform for European Reference Networks (ERNs)

The Clinical Patient Management System platform aspires to accelerate diagnosis and treatment of rare diseases in the European framework European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European countries and over 300 hospitals covering all…

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MEDICAL

Webinar on osteoanabolic treatments

Tuesday 25 June 2019 from 17:00 to 18:00 CET the European Calcified Tissue Society – ECTS is hosting a free webinar called “How to target patients for osteoanabolic treatments?” Speaker: Prof. Bente L Langdahl Professor of Endocrinology and Internal Medicine, Aarhus University, Denmark Moderator: Prof Willem F Lems Department of Reumatology, VUmc, Amsterdam, Netherlands The…

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MEDICAL

The Good2Go MyHealth Passport – now available for OI!

There is great news coming from Shriners Hospitals for children, Canada! On the other side of the Atlantic, a promising tool has gained increasing popularity and is likely to represent an important step further in both transitional care and patient empowerment worldwide: the Good2Go MyHealth Passport. Developed as an online tool, the MyHealth Passport is…

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