CONFERENCES

See, Hear, Smile! in Riga

From Friday 14th of June to Saturday 15th, Riga, Latvia was the place to be for the OI community. On Friday, the sun was shining, temperatures were high, people in the streets wore summer clothes and highly-needed sunglasses, stopping every now and then to appreciate the beauty of the city or some refreshments at a…

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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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Participants of topical meeting See, Hear, Smile!CONFERENCES

Abstracts See, Hear, Smile!

A great topical meeting has come to an end. More than 82 people from 22 countries met in Riga, Latvia from June 14th – 15th to discuss and learn about eyes, ears and teeth of people with OI. The event had a lot of positive feedback already, and we feel we succeeded in creating an…

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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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YOUTH

Art contest for children

The Health and Art (HEART) Group are planning to organize the 5th International Festival of Paintings for Pediatric Patients (IFPPP) in November 2019, in Budapest, Hungary. They cordially invite all children and adolescents (<18 years old), who were admitted in a hospital during their life, to submit their paintings to the festival. Instructions: Painting (Drawing)…

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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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RESEARCH

Care-for-Rare Award 2019

The Care-for-Rare Foundation at the Dr. von Hauner Children’s Hospital of the Ludwig-Maximilians-Universität München launches this year again the Care-for-Rare Science Award 2019. The Care-for-Rare Science Award is endowed with 50,000 Euro and should give scientists the chance to initiate a basic or clinical research project in the field of rare diseases. A disease is…

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