Dr. Sabine HELLEMANS
Psychologist
Psychology
Members
Meet the dedicated members of our Psychology Group, each bringing a wealth of experience and expertise to the table. From seasoned psychologists shaping the landscape of mental health in rare diseases to clinicians dedicated to improving doctor-patient communication, and patient representatives advocating for holistic care—we are a united force committed to making a difference.
Ghent University Hospital, Ghent
HTAD European Reference Center, Reference Center Marfan Syndrome and Related Conditions
Hôpital Femme Mère Enfant – HCL, Bron
HHT European Reference Center, Rendu-Osler Disease Reference Center
Silvie FOURDRINOY
Psychologist
AP-HP Hôpital Européen Georges Pompidou, Paris
PPL European Reference Center, Hôpital Cognacq-Jay
Sandrine JEANMAIRE
Psychologist
Universitätsklinikum Marburg, Marburg
HHT European Reference Center, Universitätsklinikum Marburg Angioma Center
Pr. Urban GEISTHOFF
Otorhinolaryngologist
Dr. Tobias GEISEL
Psychiatrist
Alfried Krupp Krankenhaus, Essen
NEUROVASC European Reference Center, Neurology Clinic
Jana OHLENHARD
Psychologist Student
University Medical Center Hamburg-Eppendorf, Hamburg
HTAD European Reference Center, German Aortic Center Hamburg
Dr. Meike RYBCZYNSKI
Cardiologist
Istituto Neurologico Carlo Besta | Fondazione IRCCS, Milan
NEUROVASC European Reference Center, Department of Clinical Neuroscience
AISED ONLUS – Associazone Italiana Sindrome Ehlers-Danlos
Alessandra VERONESE
Patient Advocate
Mater Dei Hospital, Msida
HTAD European Reference Center, Department of Cardiology
Dr. Maryanne CARUANA
Cardiologist
Nij Smellinghe Hospital, Drachten
PPL European Reference Center, Expertise Center for Lymphovascular Medicine
Annemieke HOFS
Psychologist
Leiden University Medical Center, Leiden
NEUROVASC European Reference Center, Department of Clinical Genetics
Lucienne B. VAN DER MEER
Psychologist
Radboud University Medical Center, Nijmegen
VASCA European Reference Center, Expertise Center for Hemangiomas and Congenital Vascular Abnormalities (Hecovan)
Dr. Carine VAN DER VLEUTEN
Dermatologist
Oslo University Hospital, Oslo
HTAD European Reference Center, Department of Cardiothoracic Surgery and Medical Genetics
Anne-Mette BREDAHL
Psychologist
Elisabeth FAGERENG
Psychologist
Taran YOUSSEFIAN BLAKSTVEDT
Psychologist
Associação Nacional de Doentes Linfáticos (andLINFA)
Manuela LOURENÇO MARQUES
Patient Advocate
Sant Joan de Déu Barcelona Hospital, Barcelona
VASCA European Reference Center, Dermatology Service
Marta LLORENS
Psychiatrist
Laia MOLLA
Psychologist
Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)
Carmen QUIRÓS PAZ
Patient Advocate