ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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ADVOCACY

RARE 2030 Scenarios

The Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. Rare2030 is a two…

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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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