Pr. Guillaume JONDEAU
Cardiologist
Communication
Members
AP-HP Hôpital Bichat – Claude-Bernard
HTAD European Reference Center, CRMR Marfan Syndrome and related disorders
Treasure UDECHUKWU
VASCERN Communication and Patient Support Officer
Essen University Hospital
HHT European Reference Center, Essen Center for Rare Diseases
Dr. Freya DROEGE
ENT Physician
St. Antonius Hospital
HHT European Reference Center, Dutch HHT expertise center
Dr. Hans-Jurgen MAGER
Pulmunologist
Radboud University Medical Center
VASCA European Reference Center, Expert center for Hemangioma and Vascular Anomalies (Hecovan)
Dr. Carine VAN DER VLEUTEN
Dermatologist
Associação Nacional de Doentes Linfáticos (andLINFA)
Manuela LOURENÇO MARQUES
ePAG PPL Co-Chair
Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)
Carmen QUIRÓS PAZ
ePAG HTAD Co-Chair