ADVOCACY

CEF-meeting in Brussels

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…

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STORIES

This is not a person

Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to. We have asked him to tell us a little bit about his project and his intentions behind the film Esto no…

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CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

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EDUCATIONAL

Registries in Rome

OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda…

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OIFE

New OIFE volunteer

Who are you and what is your connection to OI? I am Julien Delaye, 26 years old, living in Belgium. Over the past seven years, I studied marketing, European Public Health, and more recently Public Policy and Administration, which took me to several places such as Denmark, the Netherlands, Finland and Ireland. A few months…

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ADVOCACY

Rare2030 & OIFE at EURORDIS events 2019

Holistic and Integrated Care by 2030: EURORDIS Membership Meeting 2019 in Bucharest By Dana Andrei, OIFE Delegate Romania & Rebecca Tvedt Skarberg, OIFE delegate Norway and ERN BOND ePAG Black Pearl Events The Black Pearl Events took place on the 12th of February and Rebecca Tvedt Skarberg and her husband Knut Erik were invited to…

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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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