Coordination team

The new coordination team is formed by the people responsible for the day-to-day management of ITHACA:

  • Coordinator: Pr Alain Verloes, MD, PhD, medical geneticist, coordinator (HCP co-funded position)
  • Past coordinator: Pr Jill Clayton-Smith (in an advisory capacity if full membership is limited by Brexit conditions)
  • Project manager/coordination officer: Anne Hugon :  in charge of relations with the network members and EU, coordination of networking, relations with Solve RD and EJP-RD, budget supervision, monitoring of WP teams, relations with Patient Council, CPMS help desk supervisor (HCP co-funded position).
  • Project manager: Klea Vyshka: in charge of relations between ITHACA and the EU, implementation of the ILIAD registry,relations with Solve RD and EJP-RD , budget supervision, monitoring of WP groups… (ERN-funded position)
  • Communication Manager Sarra Selatnia : oversight of disseminated data on the website, relations within ITHACA network and the EU, dissemination across the ERN network, newsletter (ERN-funded position), relations with Solve RD and EJP-RD, integration with Orphanet, HCP and AP monitoring data, help to technical aspects of IT developments

Executive Committee

The ExCom will facilitate dissemination of information from EU to the HCP network, updates about Workpackage progress and communication between workgroups. The members of the ExCom are:

  • All Members of the Coordination Team
  • Chair and co-chair of all Workgroups
  • Chair and co-chair of the Patient Council.

The Executive Committee has 6 bimestrial meetings per year: 4 WebEx Meetings (every 2 months), and 2 face-to-face Meetings. The agenda and minutes are prepared by the Project Manager. In case of voting, each member has a vote. In the event of a tie vote, the ERN coordinator’s vote shall prevail.

Board of Members

The Board of ITHACA consists of the local Coordinators of full member HCPs, the local Coordinators of affiliated members and affiliated hubs, the members of the ExCom that are not local coordinators, and 5 representatives of the Patient Council (including the 2 who are members of the ExCom). In case of a vote, all members of the ExCom, all representatives of full members and the 5 representatives of the Patient Council have a vote.