Patient Organisations working GROUP


  • Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways
  • Support the network with the dissemination of information and communication to the wider patient community
  • Contribute to the development of research priorities and ensure they are informed by the needs of patients and families
  • Advise on ethical issues on the application of personal data rules, compliance of information consent and management of complaints
  • Engage with the appropriate patient communities for disease specific activities and projects
  • Anything else needed to achieve RIPAGs goals and objectives.

Participation in other RITA WGs:



Malena Vetterli

FMF & AID Global Association

Additional activities


INTRODUCTION The patient-centered care and

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