OIFE in Paris
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 rare diseases in Ukraine and a discussion about access to genetic testing in Europe.