Support Teams

Office of IRDiRC Chair

 Name Title and Organization
David PearceIRDiRC Chair
President of Research, Director of Sanford Children's Health Research Center, Professor of Pediatrics
Samantha ParkerIRDiRC Vice Chair
InnoSkel Chief Patient Access Officer

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. 

The activities developed and performed by the Scientific Secretariat are: 

  • Support the work of the IRDiRC bodies, including the Consortium Assembly, the Operating Committeethe 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) 

 Name Title and Organization
Daria JulkowskaCoordinator, Scientific Secretariat, INSERM, France
Galliano ZanelloProject Manager, INSERM, France
Mary Catherine LetinturierProject Manager, INSERM, France
Alexandra TataruProject Manager, INSERM, France
Tanguy OnakoyCommunication Manager, INSERM, France
Aniket SharmaProject Assistant, INSERM, France