ECPC project manager, Kalliopi Christoforidis, has been elected Patient Representative of the EURORDIS Rare Cancer ePAG  (European Patient Advocacy Group).

EURORDIS is developing an ePAG for each ERN (European Reference Network) disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.

Kalliopi became very involved with rare cancers since the very beginning through the EU funded project, RARECAREnet.  Following the great success of the project and the growing expertise of ECPC in the field of rare cancers, Kalliopi is now also involved in the Joint  Action on Rare Cancers (JARC). She is therefore the perfect person to represent the voice of rare cancer patients within the ePAG. 

 

The role of ePAGS

Specifically, ePAGs:

  • Ensure care is patient-centred and respects patients’ rights and choice;
  • Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development and decision-making;
  • Ensure transparency in quality of care, safety standards, clinical outcomes and treatment options,
  • Ensure all ethical issues and concerns for patients are addressed, balancing patients’ and clinician needs appropriately;
  • Ensure feedback and evaluation of patient experience;
  • Contribute to the development of patient information, policy, good practice, care pathways and guidelines;
  • Ensure the application of personal data rules, compliance of information consent and management of complaints;
  • Advise on planning, assessment and evaluation of the ERN;
  • and Ensure the needs of all people living with a rare disease are considered and included in the ERN discussions and activities, specific to the scope of their respective ERN.

 

For more information please visit: http://www.eurordis.org/content/epags