European Patient Advocay Groups (ePAG’s)
Collaboration between European patient organisations
EURORDIS wants patient organisations to participate in decision-making processes in the European Reference Network (ERN) so that patients are represented.
For this reason, EURORDIS has developed a European Patient Advocacy Group for each ERN disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations to ensure that the patient’s voice is heard during the ERN development process.
It is important that patient representatives and clinicians negotiate how they work together in the new ERN-system. EURORDIS will continue to support patient representatives in the development of this approach and in ensuring the development of ePAGs.
Our organisation is represented in the following ePAGs:
14-rare skin disorders.
18-rare multi-systemic vascular diseases (VASCERN)