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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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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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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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…

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EDUCATIONAL

The EURORDIS Open Academy

OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…

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