Meet our team – IRDiRC

IRDiRC Scientific Secretariat

The Scientific Secretariat provides day-to-day actions and management to the IRDiRC Consortium and its members in order to reach the IRDiRC Goals.

Sanford School of Medicine of the University of South Dakota, USA

Patient Advocacy and Communication Lead Rare Disease Europe, ITALFARMACO, France

Fondation Maladies Rares, France

Fondation Maladies Rares, France

Fondation Maladies Rares, France

Fondation Maladies Rares, France

The activities developed and performed by the Scientific Secretariat are:

Support the work of the IRDiRC bodies, including the Consortium Assembly, the Operating Committee, the Constituent and Scientific Committees, as well as the IRDIRC Task Forces and Working Groups
Organize regular meetings, teleconferences and events by coordinating actions between various stakeholders 
Develop and provide preparatory documents, write relevant reports and scientific publications to ensures the liaison between the different bodies to optimize their complementary activities 
Assure a smooth organization of the Consortium 
Support the advances in research on rare diseases by collecting and disseminating pertinent information and results to the IRDiRC members and the wider rare diseases community
Facilitate the cooperation with other stakeholders and projects  
Provide secretarial assistance to IRDiRC bodies by maintaining up-to-date member and circulation lists, providing meeting agendas, preparatory documents, and report drafts, and inviting new Scientific Committee and Task Force members 
Communicate IRDiRC Vision & Goals, activities, initiatives, calls, and updates to its members, larger rare disease community, and the public by various means, including website, newsletters, social media, communication materials, conferences, journal publications, and social media (Twitter)