The patient-centered care and patient empowerment are founding principles of the European Reference Networks (ERNs), and therefore, patient organisations are integral to ERNs. Patient organisation participation enhances the capacity of ERNs to improve patient health outcomes and patient satisfaction.

ERN RITA includes 4 disease streams: Autoinflammatory Diseases, Primary immunodeficiency, Autoimmune diseases and Paediatric rheumatology. For more information on ERN RITA, please click here (link to the RITA main page).

RIPAG (the RITA patient advisory group) was formed to bring patient representatives together under one umbrella group to contribute to the network’s activities. RIPAG is open to all patient organization representatives active in the 4 streams of ERN-RITA.


To safeguard the patient centric profile of the ERN RITA and contribute to the RITA network according to the critical role patients and patient representatives play, as experts by experience and co-producers of knowledge in all ERN activities.


Patient representatives taking part in RITA have come together to form RIPAG, the RITA Patient Advocacy Group. The mission of RIPAG is to safeguard the patient centric profile of the ERN RITA and contribute to the ERN RITA according to the critical roles played by patients and patient organisations, as experts through their experience and co-producers of knowledge in all ERN activities.

As ERN RITA represents four disease areas: primary immunodeficiency, autoinflammatory, autoimmune diseases and pediatric rheumatology, the patient groups collaborating within RIPAG also represent patients living with these diseases. To find out more about the RIPAG’s role, please click here.

Patient representatives participate in all the governing bodies of ERN RITA, for example, one patient representative per disease arm is active in the RITA Board. They are elected by their own stream, so that one patient representative per stream is appointed to the RITA Board. Patient representatives are also members of the different RITA working groups to ensure that the work done is patient centered.


To ensure an active and meaningful participation in RITA’s activities, patient organisation representation is organised as follows:

  • RIPAG Board: A group of RIPAG Patient Representatives actively discussing patient engagement in RITA Working Parties and ensuring patient representation throughout RITA’s activities.
  • RIPAG Council: A group of RIPAG Patient Representatives actively participating in RITA’s Working Groups.
  • RIPAG Patient Representatives: Individuals within a RIPAG stream, having an official permanent mandate to represent their Patient Advocacy Group
  • RIPAG Members: Patient Advocacy Groups involved in the four disease streams of RITA


Patient representatives are also engaged in the RITA Working Groups and contribute with their valuable input. There are 11 working groups: Education, Clinical Guidelines, Communication, IT/e-Health, Molecular Testing, Patient Organisations, Pharmacovigilance/Biological Therapies, Registries/Biobanks, Research, Stem Cell & Gene Therapy, Transition Pediatric/Adult Care.

Patient representatives on each working group do not just represent their own patient organizations or even their disease area, but they are there to represent the wider-patient community for the diseases represented under RITA.


ERN RITA gathers doctors and researchers with a high expertise in the field of primary immunodeficiencies, autoimmune disorders, autoinflammatory diseases and pediatric rheumatology. ERNs are virtual networks which discuss the diagnosis and the best possible treatments for patients from all over Europe. ERN RITA can bring the expertise that is often missing in a particular region or country and help patients have a better diagnosis and treatment at home. Some concrete examples of the added value of ERNs are as follows: virtual advisory board, clinical patient management system or patient collaboration within the work developed by ERN RITA.

Virtual advisory panel

Complex cases are sometimes discussed in a “virtual” panel of medical experts from across different disciplines and countries at the request of the treating physician. This way, the treating physician can benefit from the collective input of experts from different EU countries and improve diagnosis, treatment or care for an individual patient.

Clinical patient management system

To help patients and clinicians, an online platform for virtual clinical consultations called CPMS (Clinical Patient Management System) was developed. Instead of the patient traveling abroad to see a specialist, the information does the traveling. More information can be found here.


For patients who would like to contact RIPAG, please send an e-mail to

Patient associations wanting to be actively involved in RIPAG are most welcome to apply if they meet the eligibility criteria. For more detailed information on this, please refer to the RIPAG Terms of Reference or e-mail RIPAG at

Documentation for download

RIPAG Statement Conflict of Interest form
RIPAG Code of Conduct and Ethics
RIPAG Non-disclosure agreement
RIPAG Terms of reference