RESEARCH

Webinar on registries

Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future. Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well…

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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. OIFE had a patient representative present to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines, unmet…

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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

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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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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MEDICAL

Share your experience with treatments

HAVE YOU EVER RECEIVED TREATMENT FOR YOUR OI? Then OIFE & EURORDIS is interested in hearing from you. Take 10 minutes to complete the new #RareBarometer survey on your experience of rare disease treatments and share your views. Survey available here in 23 languages: http://bit.ly/eurordis-survey NOTE! New this time is that you don’t have to…

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CONFERENCES

OIFE at Mereo

On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…

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