RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call. We were particularly interested in challenge nr. 3 “Characterize Rare…

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EDUCATIONAL

OIFE at EURORDIS Winter School

EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…

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STORIES

Artists with OI: Matt Shilcock

Who are you and what do you do? My name is Matt Shilcock, I am a contemporary dancer and performing artist from Adelaide, South Australia. I have been creating and performing dance theatre works in festivals and locations around the world over the last 10 years. I predominately perform Contemporary Dance, but living with OI,…

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ADVOCACY

EMA & EURORDIS Summer School

The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…

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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…

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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…

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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…

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ADVOCACY

29th EURORDIS Round Table of Companies Workshop

On February 19th 2020 OIFE was again represented at an EURORDIS event in Brussels. Vice President Dace Liepina participated at the 29th EURORDIS Round Table of Companies Workshop “How to teach an old medicine new tricks – The importance of repurposing medicines for patients”. The meeting is primarily for pharma companies, but also open for…

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EVENTS

Report from ‘See, Hear, Smile!’

The title and graphic identity of the Latvia meeting Jean Moitry and I attended in Riga is a reference to the Chinese tale of the three monkeys. One of them doesn’t see, the second doesn’t hear and the third hides his mouth. This is an optimistic message because the meaning of the parable is that…

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