Get involved in Rare Disease Day!

Last chance to get involved in Rare Disease Day! Have you noticed that OIFE has had a Rare Disease Day campaign going in our social media (Facebook, Twitter and Instagram) the last 1,5 week? Through various posts our goal has been to raise awareness about rare diseases, about osteogenesis imperfecta and about OIFE. Make sure…


Rare 2030 needs you!

Rare 2030 is seeking young rare disease patient advocates to contribute to the future of rare disease policy. If you are 18-30 years old and living with a rare disase yourself, a sibling or a student in a related field you can get involved. Motivated by the rare disease cause? Interested in advocacy? Rare2030 project is…


Rare Disease Day events in Brussels

EURORDIS ’Reframe Rare’ Policy Event On February 18th at the European Parliament EURORDIS – European Rare Diseases Organisation was relaunching the Network of Parliamentary Advocates for Rare Diseases, made up members of parliament (MEPs) advocating to improve the lives of the 30 million people with rare diseases in Europe. The EURORDIS ’Reframe Rare’ Policy Event…


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…


Impressions from ‘See, Hear, Smile!’

Armaana Ahmad Paediatric Dentistry, Eastman Dental Hospital London I am a Paediatric dentistry and junior researcher interested in dental anomalies in children with OI. I don’t have a formal relationship with OIFE but would like to! I think the Topical Meeting was excellent. Well thought out content allowed networking and sharing of current research with…


New Rare Bone Network

Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…


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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