Network
Patient Representation
Patient representation plays a vital role in VASCERN’s mission to improve care for rare vascular diseases. The European Patient Advocacy Groups (ePAGs) ensure that patient perspectives are included in every aspect of VASCERN’s work. These groups consist of patient representatives who work closely with healthcare professionals to shape clinical guidelines, improve patient pathways, and advocate for the needs of those living with rare diseases.
Explore the ePAG Representatives for Each Disease Group:
- European Patient Advocacy Group (ePAG): Learn more about the central role of the ePAG in patient advocacy and discover the members contributing to VASCERN’s mission.
- Hereditary Haemorrhagic Telangiectasia (HHT) ePAG: Meet the patient representatives involved in the HHT ePAG who advocate for care improvements for those with HHT.
- Heritable Thoracic Aortic Diseases (HTAD) ePAG: View the list of patient advocates in the HTAD ePAG who collaborate on improving care for those with thoracic aortic diseases.
- Medium-Sized Arteries (MSA) ePAG: See the MSA ePAG representatives working to ensure the needs of patients with medium-sized artery conditions are addressed.
- Neurovascular Diseases (NEUROVASC) ePAG: Discover the patient advocates who participate in the NEUROVASC ePAG to improve care for rare neurovascular diseases.
- Pediatric and Primary Lymphedema (PPL) ePAG: Learn about the representatives in the PPL ePAG who work to advocate for patients with pediatric and primary lymphedema.
- Vascular Anomalies (VASCA) ePAG: Meet the members of the VASCA ePAG who focus on improving care for patients with vascular anomalies.
- Patient Organizations: Explore the patient organizations that collaborate with VASCERN to support advocacy efforts and care for rare vascular diseases.