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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MEDICAL

C4C – study on Losartan & OI

New conect4children Consortium will include a study on Losartan as a treatment for osteogenesis imperfecta. The conect4children (c4c) consortium announced  on April 29th the selection of its first portfolio of pan-European paediatric studies aimed at advancing the understanding of high priority medicines commonly used in babies, children and young people in Europe. The four inaugural…

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EVENTS

Call for abstracts

Are you a clinician or researcher interested in OI? Then the conference Quality of Life 4 OI is waiting to hear from you. Key dates to keep in mind: 1 June 2019, 23:59 CET: Abstract submission deadline 1 July 2019: Notifications to authors Submitting your abstract provides you with an opportunity to: gain visibility for…

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EVENTS

See, Hear, Smile!

2 Weeks left until Early Bird Deadline! Are you a professional who’s interested in eyes, ears and teeth of people with OI? Or basilar invagination (BI)? Do you yourself have issues related to this? Then we invite you to take part in our seminar See, Hear, Smile! from June 14th – 15th in Riga, Latvia.…

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