IPOPI attended the Council meeting of the Rare Immunodeficiency, Autoinflammatory and Autoimmune (RITA) European Reference Network (ERN), held in Amsterdam, the Netherlands, on May 10, 2017.
The meeting built on the outcomes of the European Reference Network (ERN) conference held in Vilnius, Lithuania earlier this year in March. This was the first meeting of the RITA Council which consists of the RITA Board as well as the Chairpersons of the various RITA working groups and patient representatives. Among the various items discussed during the meeting, a key topic was the set-up of the various RITA working groups. Their role and objectives, as well as their proposed membership, were reviewed.
Patient engagement in RITA and its working groups was specifically addressed to ensure the network adopts a patient-centred approach, a key concept of the ERNs. Overall 11 working groups have been created within RITA to focus on the following priorities: education, clinical guidelines/recommendations, registries/biobanks, molecular testing, IT/e-health, stem sell/gene therapy, transition care, communications, patient organisations, pharmacovigilance/biological therapies and research.
IPOPI has been liaising with the Eurordis e-PAG representatives who represent the non-PID patient communities in the network to ensure patient representatives from the relevant PID, auto-immune and auto-inflammatory patient communities are actively taking part in the activities of the RITA working groups. The meeting was also an opportunity to discuss the RITA’s website, the formation of the EU coordinators groups (which will bring together the different ERNs around key topics) and governance among other topics.
Since the meeting, it has been agreed that the following patient representatives will be members of the RITA Council: Johan Prévot (for PID), Peter Verhoeven (for auto-immune) and Richard West (for auto-inflammatory). It was agreed to have one patient representative on the RITA Board which will be Johan Prévot with a view that this position will rotate in the future between patient representatives from the different arms of RITA. As for the (non-medical) working groups, Martine Pergent (IPOPI) was appointed as Chaiperson of the Communications Working Group with Richard West as Co-Chair and Peter Verhoeven was appointed as Chairperson of the Patient Organisations working group with Leire Solis as Co-Chair.
From the IPOPI side, Mrs Jose Drabwell is part of the Registries Working Group and Mr Andrea Gressani of the IT/e-Health Working group and of the Transition of Care Working group.
The first official RITA meeting will be organised in Edinburgh on, September 12, in parallel to the ESID meeting.