European Patient Advocacy Groups – ePAGs

European Patient Advocacy Groups (ePAGs)

Due to the complexity and low prevalence of rare diseases, as well as to the limited body of knowledge, experience and expertise in the field of rare diseases, the role of rare diseases patients (as experts in their diseases) in the development of ERNs is fundamental. Therefore, a higher level of involvement of patients in the decision and opinion-making processes is essential to ensure the successful development of ERNs.

EURORDIS has established European Patient Advocacy Groups (ePAGs) for each established RD ERN, gathering elected patient representatives who will ensure that the patient voice is heard throughout the development of ERNs. ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process. Patient organisations can become ePAG member organisations and patients can become ePAG representatives. ePAGs are formed of member organisations and elected representatives.

Read here the interview with Inês Alves, patient representative in ERN BOND


ePAG Tasks

E-PAG representatives provide the patient perspective to the ERN BOND SC, MC and SAB, and on the organization and management of the network, specifically to:

  • ensure care is patient-centred and respects patients’ rights and choice
  • promote patient-centric approach in delivery of clinical care
  • ensure transparency
  • monitor ethical issues
  • ensure evaluation of patient experience
  • contribute to the development of patient information, policy, good practice
  • care pathways and guidelines
  • participate in ERN evaluation

Concrete participation of ePAGs will facilitate the Network to develop cost-effective supportive environment that enables citizens to become more pro-active in co-defining and implementing healthcare plans. This will focus both on active health management, and on improving self-management of medical conditions. EPAGs members and patient associations will be actively involved in WG9 “Visibility Towards Patients & HCP”, with dedicated funding allocation to support specific activities.

They are working for an effective communication and engagement of the end users and all the relevant stakeholders, including: patients and caregivers, the general practitioners, other stakeholders such as patients associations, caregivers associations, policy makers, the scientific community, the industry and the public health institutions.

Norway Skarberg Rebecca Tvedt OIFE – Osteogenesis Imperfecta Federation Europe rebeccatvedt@yahoo.no
Portugal Alves Inês ANDO Portugal; EUPATI Fellow inesp.alves@gmail.com
France Martin Elisabeth Association Ollier-Maffucci Europe babetmartin@gmail.com
Denmark Toft Olesen Tenna XLH patient organisation tennatoft@hotmail.com

 

ePAGs inclusion procedure

Due to the complexity and low prevalence of rare diseases, as well as to the limited body of knowledge, experience and expertise in the field of rare diseases, the role of rare disease patients (as experts in their diseases) in the development of ERNs is fundamental. Therefore, the document has been created in order to attract new ERN BOND ePAG advocates for a higher level of involvement of patients in the decision and opinion-making processes is essential to ensure the successful development of ERNs.

Read the Network agreement regarding the rules for the ePAGs: ERN BOND ePAG criteria procedure