CONFERENCES

See, Hear, Smile! – Day 2

See, Hear, Smile! – a topical meeting on osteogenesis imperfecta (OI) gathered an international panel of experts and patient representatives from the 14th to the 15th of June in Riga, Latvia to discuss dental, hearing, vision and craniofacial issues in osteogenesis imperfecta (OI). The meeting gathered more than 80 participants from 22 countries. These are…

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CONFERENCES

See, Hear, Smile! – Day 1

The topical meeting See, Hear, Smile!  hosted by OIFE gathered an international panel of experts and patient representatives from the 14th to the 15th of June in Riga, Latvia. The purpose was to discuss dental, hearing, vision and craniofacial issues in osteogenesis imperfecta (OI). The meeting gathered more than 80 participants from 22 countries. These…

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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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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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