Martine Pergent (IPOPI Vice-Chair), Johan Prevot (Executive Director), Leire Solis (Health Policy and Advocacy Manager) and Saara Kiema (NMO Programmes Officer) all attended the meeting of the European Network on Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune diseases (ERN RITA) organised in Lisbon (Portugal) on September 7, 2018.
ERN RITA is organised in working groups (WG) and the chairs of each WG make up the ERN Council. The Council meeting provided an update on the work being developed.
ERN RITA’s working groups are all related to patient care and knowledge improvement of autoimmune, autoinflammatory and primary immunodeficiencies throughout the European Union. The Council aims at steering the activities of RITA and exchange information on challenges and opportunities that may arise during this collaboration across healthcare professionals in the European Union.
IPOPI is contributing to the development of ERN RITA, in coalition with other patient groups representing the other disease areas of the network, with a view of bringing the patient’s voice into the structure and contribute with its expertise to the development of the project.
The European Reference Networks, a project launched by the European Commission in collaboration with European countries, aims at establishing networks between healthcare professionals working in rare diseases, in order to improve knowledge, facilitate consultation amongst professionals working in the network on complex cases, with a view that it is the expertise that travels, rather than the patient. In practical terms, should a patient with a rare and complex disease affecting its immune system be unable to get the right diagnosis and care, the treating physician could request assistance, via ERN RITA, to European experts involved in the network.
For more information about ERN RITA: http://rita.ern-net.eu/