Patient advocates – ePAGs


What are the ePAGs?

European Patient Advocacy Groups (ePAGs) bring together rare disease patient advocates who are actively involved in the work of the European Reference Networks.
Each ePAG corresponds to the scope of one of the 24 ERNs, aligning patient organisations and clinicians, experts and researchers working on the same rare or complex disease or highly specialised intervention.

ePAG advocates represent the interests of the wider patient community to ensure that the needs of people living with a rare disease are included in the strategic and operational delivery of the networks.

In order to ensure a higher level of involvement of patients in the decision and opinion-making processes, EURORDIS has established ePAGs for each established ERN. ePAGs bring together elected patient representatives and affiliated organisations who will ensure the patient voice is heard throughout the ERNs’ activities. ePAGs are formed of member organisations and elected representatives.


ePAG Tasks

Patient representatives participate in all BOND governance bodies, bringing their perspective on the organisation and management of the network, specifically to:

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

ERN BOND patient representatives

4 patient advocates are involved within the BOND’s activities, from 4 different patient associations.

ePAGs members co-lead the working group “Visibility Towards Patients & HCP” which works for an effective communication and engagement of the end users and all the relevant stakeholders.
Concrete participation of ePAGs overall facilitates the Network to develop cost-effective supportive environment that enables citizens to become more proactive in co-defining and implementing healthcare plans.

 

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

Network 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.