On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…
From November 8-9 Ingunn and Renata attended the EURORDIS Council of Federations meeting in Paris. Inger-Margrethe S. Paulsen from NFOI also attended. Among the topics were access to treatments and the pharmaceutical legislation, information about Rare Disease Week and future funding options in research. There was also an update on the situation for people with…
Dear members of the international OI-community! In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…
Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…
