European Patient Advocacy Group (ePAG)
Patient empowerment is important in order to collect the most pertinent information and to allow patients to take part in making the management of their disease evolve in the most efficient manner.
The VASCERN Patient Group (ePAG, European Patient Advocacy Group) gathers Patient Representatives and Patient Organisations in Rare Multisystemic Vascular Diseases. It is one of the 24 ePAGs supported by EURORDIS and linked to the 24 European Reference Networks on rare diseases.
VASCERN ePAG has:
- 1 ePAG Chair
- 6 ePAG Co-chairs, who
- make the link with the other ePAG Representatives and ePAG Member,
- Participate in the corresponding RDWG monthly virtual meetings and activities (one per Rare Diseases Working Groups – RDWG)
- and participate in the monthly ePAG virtual meetings.
- ePAG Representatives, involved in the ePAG monthly virtual meetings and activities
- Other ePAG Members (Patient Organisations).
The ePAG enables Patient representatives to work together on common issues and deliverables, as well as to be involved in all VASCERN activities.
Please feel free to contact us here if you are interested in joining the VASCERN ePAG across all our rare disease working groups.