The ERN-ITHACA consists in 71 European Health Care Providers (HCPs) and their genetic departments from 25 out of the 27 EU Member States plus Norway. Among these 71 members, 66 are Full Members, 2 Associated National Centers and 3 National Coordination Hubs. Our HCPs deliver each year the needed care for approximately 51,500 new patients diagnosed with a rare developmental anomalies. The ERN ITHACA also has the largest number of entities, hence the largest scope and disease coverage amongst all ERNs.
ERN-ITHACA Coordination Team
The new coordination team is formed by the people responsible for the day-to-day management of the network:
- Prof. Alain Verloes, MD, PhD is the EU coordinator of ITHACA. He is medical geneticist, and head of the Genetic Department of APHP-Robert Debré Hospital, in Paris
- Ms Klea Vyshka has a background in EU law and European studies and is currently researching aspects of EU private law for her doctoral thesis. She is the Project Manager of ITHACA mainly involved in the general coordination of ITHACA, in charge of relations between ITHACA and the European Commission. She supervises the budget,
y(including relations with Solve RD and the EJP-RD), and in prenatal medicine. Klea is the support of the ELSI Advisory Board.
- Ms Anne Hugon has a background in Strategic Management of Health and Medical Services and a specialty in Documentary Resources Management and Databases. She is the Project Manager of ITHACA in charge of all activities that involve interactions with patients and patient support groups/ePAGs at the General coordination level. Anne is further is supporting the implementation and the monitoring of the CPMS (as help
- Ms Marianne Ledref holds a master degree in public law. She is the Project Manager in charge of the communication of Newkork. She is in charge of the ITHACA’s communication policy, website and the newsletters. She also oversees network’s event policy, organisation of Boards, Workshops and other public events.
- Mr Nicholas Szeto Obtained a master’s degree in linguistics. He is the Project Manager specifically devoted to the Editorial Management and Publishing of APOGeE, an e-textbook on Genetics. He edited a series of IT and programming textbooks.
- Ms Charlotte Gaasterland is a trained psychologist specialized in statistics and methodology. She is based in Amsterdam and is the Project Manager in charge of all guidelines project.
- Mr Behnam Javanmardi holds a PhD in astrophysics from the University of Bonn. He is the ITHACA Project Manager in charge of the digital activities Workgroup that he will support as a data scientist.
- Ms Mirthe Klein Haneveld is a medical doctor – clinical researcher and Phd candidate. She has joined the ERN-ITHACA Guidelines workgroup to develop a methodology for evidence-based clinical practice guideline development in rare diseases, with special attention to the engagement of patient representatives throughout the process.
Board of Members
The Board of ITHACA consists in the Representatives of all 71 Members, ExCom Members who are not already Representatives of an HCP, and all 5 Patient Council Members. It is the highest decision-making structure of ERN ITHACA and thus defines the missions and strategic direction of the network: how should the network activities develop and expanse themselves, how to collaborate with other European initiatives and partners. The Board gathers twice a year to discuss these strategic issues.
Executive Committee (ExCom)
The ExCom facilitates the dissemination of information from the EU to the network’s 71 HPCs. It also shares updates about Workgroups and ensure communication between them. Members of the ExCom are:
- The ERN-ITHACA Coordinator
- All Project managers from Coordination Team
- The Chair and one co-chair of each WGs
- The Chair and co-chair of the Patient Council
- One Representative from Orphanet, the EJP-RD, and Solve RD
Each ExCom members has one vote except for the Coordination Team who has two in total. All WG’s co-chairs with no voting rights may be invited to Board meetings by the coordinator.
The Executive committee has 6 bimestrial meetings per year: 4 digital meetings (every 2 months), and 2 face-to-face meetings (before the Board meeting). The agenda and minutes are prepared by the Project Managers. In case of voting, each member has a vote. In the event of a tie vote, the ERN coordinator’s vote prevails.
ERN ITHACA Work Packages
ERN ITHACA activities are organized into 10 Workpackages. The first six ones follow the European Commission recommendations to harmonize organizational structure across all ERNs. To this backbone, ITHACA has added four Workpackages: two dedicated to activities strongly linked to the clinical research (WP Research and and WG Registry), and the remaining two that cover the patient-oriented activities (share, care and cure) in the two fields of expertise of the ERN-ITHACA: neurodevelopmental disorders and malformation syndromes.
ERN ITHACA Working Groups and Task Forces
The Workgroups are the driving force behind the ERN’s actions: they translate the strategic axes defined for the 10 Workpackages into concrete projects and actions. A Workpackage may involve several Workgroups and the attachment of a Worgroup to a Workpackage may evolve with time. Each Workgroup is driven by a Chair, who is a member of an ITHACA HCP, and is chosen for his or her expertise in the field. The Chair then put the Workgroup in place by bringing together sevel other experts to collaborate on a given subject (see Workgroups – ERN ITHACA).
The activity within a Workgroup is divided into several Task Forces, each supervised by a Taskforce leader, who acts as one of the Workgroup’s co-chair. One person can be leader of several Taskforces and the Chair himself is responsible for at least one Taskforce. Co-chairs are appointed on the basis of their personal expertise, and do not necessarily have to be members of an HCP.
At Board meetings, the Workgroup is represented by the Chair and one of the Co-chairs who is formally appointed by the Chair after deliberation and voting within the Wokgroup. In case of a tie, the Chair makes the final decision. The Chair and the designated co-chair have voting rights on the Board, and the other co-chairs may be invited as observers.