✨“What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates already participating in the network when I joined. It is a true joy to work with such dedicated and professional patient advocates!”✨
Our first VASCERN Spotlights article of 2019 is out and features Lise Murphy, our European Patient Advocacy Group (ePAG) Co-Chair for the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG)! Lise is from Sweden and talks about her patient organisation, Svenska Marfanföreningen, Marfan syndrome and the upcoming "3 a week campaign", and her hopes for the ERNs. Read the full interview here: https://vascern.eu/vascern-spotlights-lise-murphy/ #ERNeu Marfan Europe Network EURORDIS - European Rare Diseases Organisation ... See more