Patient Representation

The European Patient Advocacy Group (ePAG) is a pivotal group within VASCERN. Our ePAG page is designed to spotlight the different patient representatives across our 6 rare disease working groups (RDWGs) and patient organisations across Europe empowering patients and their families. By bringing together patient advocates from across Europe, ePAG fosters a collaborative environment where the patient voice is not just heard but is a critical component of our decision-making and strategy development processes.

About the ePAG: Learn about the ePAG and its structure.

Missions: Learn about the core missions of the ePAG in ensuring that patients’ voices are integral to the work of the network.

Hereditary Haemorrhagic Telangiectasia (HHT) ePAG: Meet the ePAG representatives advocating for patients with HHT, focusing on enhancing diagnosis, treatment, and access to care.

Heritable Thoracic Aortic Diseases (HTAD) ePAG: Meet the ePAG representatives advocating for patients with HTAD, focusing on enhancing diagnosis, treatment, and access to care.

Medium-Sized Arteries (MSA) ePAG: Meet the ePAG representatives advocating for patients with diseases affecting medium-sized arteries such as Vascular Ehlers-Danlos syndrome (vEDS), focusing on enhancing diagnosis, treatment, and access to care.

Neurovascular Diseases (NEUROVASC): Meet the ePAG representatives advocating for patients with Neurovascular diseases, focusing on enhancing diagnosis, treatment, and access to care.

Pediatric and Primary Lymphedema (PPL): Meet the ePAG representatives advocating for patients with pediatric and primary lymphedema, focusing on enhancing diagnosis, treatment, and access to care.

Vascular Anomalies (VASCA): Meet the ePAG representatives advocating for patients with vascular anomalies, focusing on enhancing diagnosis, treatment, and access to care.

Patient Organizations: Find patient organizations across Europe represented in the ePAG and collaborate with the ePAG to enhance the impact of their advocacy, offering support and sharing invaluable resources within the community.