EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN. Including patient representatives directly in all structures of the ERN helps to ensure that the activities of the network reflect the actual needs of patients. ePAGs and ePAG representatives :

  • Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
  • Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
  • Advocate for care that is patient-centred and respectful of patients’ rights and choice
  • Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
  • Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
  • Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
  • Advise on overall planning, assessment and evaluation of ERN activities and initiatives
  • Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
  • Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
  • Monitor and evaluate the adoption of patient feedback by the ERN based on patient experience surveys prioritising the objectives, work plan and service improvement in the network on an annual basis
  • Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
  • Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
  • Identify expert centres to join the ERN as a full member or affiliated partner
  • Provide an evidence-based patient perspective on the needs of people living with a rare disease and ensure all rare diseases are considered and included in ERN discussions and activities
  • Produce annual ERN evaluation reports

Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with ERNs.

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