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
HTAD European Reference Center, Center for Medical Genetics
Hôpital Femme Mère Enfant – HCL
HHT European Reference Center, CRMR Rendu-Osler
Silvie FOURDRINOY
Psychologist
AP-HP Hôpital Européen Georges Pompidou
PPL European Reference Center, Primary Lymphedema Unit, Hôpital Cognacq-Jay
Sandrine JEANMAIRE
Psychologist
UKGM – Universitätsklinikum Marburg
HHT European Reference Center, Universitätsklinikum Marburg Angioma Center
Pr. Urban GEISTHOFF
Otorhinolaryngologist
Dr. Tobias GEISEL
Psychiatrist
Alfried Krupp Krankenhaus
NEUROVASC European Reference Center, Neurology Clinic
Jana OHLENHARD
Psychologist Student
University Medical Center Hamburg-Eppendorf
HTAD European Reference Center, University Heart Center Hamburg
Dr. Meike RYBCZYNSKI
Cardiologist
Fondazione IRCCS Istituto Neurologico Carlo Besta
NEUROVASC European Reference Center, Neurosurgery Department
Carolina DE TOMA
Psychologist
Nicola RIFINO
Physician
Giulia MARINONI
Psychologist
AISED ONLUS – Associazone Italiana Sindrome Ehlers-Danlos
Alessandra VERONESE
Patient Advocate
Mater Dei Hospital
HTAD European Reference Center, Department of Cardiology
Dr. Maryanne CARUANA
Cardiologist
Nij Smellinghe hospital
PPL European Reference Center, Expert Center for lymphovascular medecine
Annemieke HOFS
Psychologist
Leiden University Medical Center
NEUROVASC European Reference Center, Department of Clinical Genetics
Lucienne B. VAN DER MEER
Psychologist
Radboud University Medical Center
VASCA European Reference Center, Expert center for Hemangioma and Vascular Anomalies (Hecovan)
Dr. Carine VAN DER VLEUTEN
Dermatologist
Oslo Universitetssykehus
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
Hospital Sant Joan de Déu 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