If you are representing a patient organisation, this patient matchmaking tool is for you to register your patient organisation's interest in becoming a member of a patient stakeholder group called an ePAG that is linked to the specific ERN that you feel best represents your organisation. It is an online tool to enable patient organisations to be aligned and connected with these new ERNs in order to ensure an equitable patient voice within the system of ERNs.
Patients are involved in ERNs through elected patient representatives as well through these stakeholder groups. Patient representatives will directly liase with member organisations in each of the stakeholder groups so to ensure that the patient voice is heard in the development, programming and evaluation of each ERN’s initiatives and activities. EURORDIS also looks for additional patient representatives to be part of the governance of ERNs and ensure that representatives are part of all the sub-clinical areas and transversal groups of ERNs.
As a member organisation you will be involved in online ePAG communities and consulted on specific ERN relevant topics to reflect patients’ viewpoints through consultations. You will receive information and updates on ERNs and be continuously informed about ERN activities.
Read more about ePAGs here: http://www.eurordis.org/content/epagsRear more about ERNs here: http://www.eurordis.org/european-reference-networks