We have just released a new Pill of Knowledge (PoK) video on our YouTube channel entitled “Role of patient advocates in a European Reference Network, from the patient team of Heritable Thoracic Aortic Diseases (HTAD)“.
This Pill of Knowledge features members of the HTAD European Patient Advocacy group (ePAG) explain their role at VASCERN including ePAG Co-Chair for HTAD Lise Murphy (Svenska Marfanföreningen), ePAG Deputy Co-chair for HTAD Elena De Moya Rubio (Marfan Hilfe), Francoise Steinbach (Association Marfans) and Tony Pugliese ( Asociacion Española de Afectados por el Sindrome de Marfan).
At VASCERN, patient organisations are important stakeholders. This is why our patient advocates work together with healthcare professionals “to push for more awareness for rare diseases” and for the improvement of management and care.
To learn more about the role of the ePAG at VASCERN, watch the video here