ERN ITHACA Virtual Board of the Network (BoN) Meeting (2020 June 8th)

Pr Alain Verloes and The Coordination Team would like to warmly thank our speakers, all the HCPs that were represented, and welcome all our guests among the HCPs applicant. Several important topics on the progress of the work of ITHACA and its collaborations have been covered.

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ERN ITHACA Board of the Network (BoN) Meeting (2020 November 22)

The ITHACA Board meeting held on last November 22, brought together 65 attendees, 29 HCPs represented, as well as from Eurordis, ePAG and European Commission. 12 speakers addressed, among other things, general network news, development of the Guidelines, IT support, Iliad Registry, EJPRD e-learning projects, collaboration with Orphanet, SySID intergation in ITHACA, spina bifida inter-ERN Work Group and presentation of the Young Genecists Network.

The representatives of each HCP and ePAG were invited to vote by show of hands on a number of measures proposed by the ERN coordinator Pr. Alain Verloes.

Reminder: ITHACA BoN is made of the Legal Board (one representative per member state + 1 representative of patient organisation, voting on official requests from the EU or Commission),  and supplementary members (WG leads, Coordination Team and further patient representative) forming together the Extended BoN voting on internal affairs of ITHACA.

The following decisions were voted for the continuation of the ERN operation:

New Full Members

  • The application files of the new candidates are disseminated to all members of the Legal BoN.
  • The legal BoN voted the delegation of the evaluation of candidates to the Executive Commity. The conclusions of ExCom are forwarded to the Legal Board Members that have a possibly to comment.
  • After concluding teleconference with the legal BoM, the Coordination team forwards the evaluations to European Commission.
  • The BoN invites systematically all new FM candidates to participate to ERN activities (including WGs) as soon as possible, as “observers” if passed the eligibility step of the Commission.

Affiliated Members

  • One representative is included in the Extended BoN (AF are not allowed in the Legal Board), and they will be treated as full members, including support by ERN for attendance to the Annual Board).

Expansion of coverage of exiting members (simplified procedure)

  • HCP can adapt the organisation of the multidisciplinary team of an HCP to the evolution of the HCP and to change in local coordination. At this point EU hasn’t proposed a strict procedure. Hence de BoN has validated the following internal rules (in the absence of EU guidelines):
  • The local coordinator of an HCP informs the Coordinator of the new organigram. This information is disseminated to all BoN members by the Coordination Team, for comments.
  • If there is no contradictions with the scope of the ERN, the modifications are endorsed by the Coordinator who informs the local Coordinator of the validation.
  • The local coordinator edits the description of its HCP in the dedicated page of the website

Pr Alain Verloes (General Coordinator)presentation

Raoul CM HennekamPresentation

Department of Pediatrics, Amsterdam UMC, Amsterdam, Netherlands

An International Library of Intellectual disability and Anomalies of Development

Introducing the ‘tech’ team : Morris Swertz, Fernanda de Andrade and MOLGENIS team

Celia Azevedo Soares & Florence Riccardi presentation

Gemma Milman presentation

Orphanet – Inserm US14, Paris, France


Bridge between the ERN and the Patient Community – Presentation
One foot in the ERN Board and the other foot in the Community