The Fondation Maladies hosts IRDiRC's scientific secretariat for 7 years.

September 19, 2024 | News

The Fondation Maladies Rares is honored to announce that it will host the scientific secretariat of the International Rare Disease Research Consortium (IRDiRC) for the next 7 years. Created in 2011 by the European Commission and the US National Institute of Health (NIH), the IRDiRC brings together 60 global organizations to improve the diagnosis and treatment of rare diseases.

The role of the scientific secretariat

The Scientific Secretariat ensures the day-to-day management of the consortium and helps its members to achieve IRDiRC objectives. Its activities include supporting IRDiRC committees and working groups, organizing meetings and drafting scientific reports and publications. It also facilitates cooperation between the various players and ensures smooth communication of advances and information within the consortium and to the wider rare disease community.

In hosting the secretariat, the Fondation Maladies Rares will have the pleasure of collaborating with two project leaders, Alexandra Tataru and Galliano Zanello, who will play a key role in organizing and coordinating the consortium's activities. This initiative reinforces our commitment to supporting research and improving care for people affected by rare diseases worldwide.

Find out more about IRDiRC at irdirc .org