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.


Belgium
Ghent University Hospital

HTAD European Reference Center, Center for Medical Genetics 


France
Hôpital Femme Mère Enfant – HCL

HHT European Reference Center, CRMR Rendu-Osler


AP-HP Hôpital Lariboisiere

 NEUROVASC European Reference Center, Centre de Référence pour les maladies rares des Vaisseaux du Cerveau et de l’œil (CERVCO) 


AP-HP Hôpital Européen Georges Pompidou

PPL European Reference Center, Primary Lymphedema Unit, Hôpital Cognacq-Jay

Sandrine JEANMAIRE
Psychologist

Association CADASIL France

Germany
UKGM – Universitätsklinikum Marburg

HHT European Reference Center, Universitätsklinikum Marburg Angioma Center

Sophie DUPUIS-GIROD 43
Pr. Urban GEISTHOFF
Otorhinolaryngologist
Dr. Tobias GEISEL
Psychiatrist

Alfried Krupp Krankenhaus

NEUROVASC European Reference Center, Neurology Clinic

Jana OHLENHARD
Jana OHLENHARD
Psychologist Student

University Medical Center Hamburg-Eppendorf

HTAD European Reference Center, University Heart Center Hamburg

Meike Rybczynski
Dr. Meike RYBCZYNSKI
Cardiologist

Italy
ASST CREMA – Ospedale Maggiore di Crema

HHT European Reference Center, Gastroenterology and Digestive Endoscopy Unit

Guido MANFREDI 1
Dr. Guido MANFREDI
Gastroenterologist
Virginio SALVI
Psychiatrist

Fondazione IRCCS Istituto Neurologico Carlo Besta

NEUROVASC European Reference Center, Neurosurgery Department

Carolina DE TOMA
Carolina DE TOMA
Psychologist
Nicola_Rifino
Nicola RIFINO
Physician
Giulia MARINONI
Giulia MARINONI
Psychologist

Associazione Fondazione Italiana HHT Onilde Carini

AISED ONLUS – Associazone Italiana Sindrome Ehlers-Danlos

Malta
Mater Dei Hospital

HTAD European Reference Center, Department of Cardiology


Netherlands
Nij Smellinghe hospital

PPL European Reference Center, Expert Center for lymphovascular medecine

Annemieke HOFS
Psychologist

CMTC-OVM

Leiden University Medical Center

NEUROVASC European Reference Center, Department of Clinical Genetics

Lucienne B. VAN DER MEER
Lucienne B. VAN DER MEER
Psychologist

Radboud University Medical Center

VASCA European Reference Center, Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Carine VAN DER VLEUTEN 1
Dr. Carine VAN DER VLEUTEN
Dermatologist

Norway
Oslo Universitetssykehus

HTAD European Reference Center, Department of Cardiothoracic Surgery and Medical Genetics

Anne-mette Bredahl
Anne-Mette BREDAHL
Psychologist
Elisabeth FAGERENG
Psychologist
Taran YOUSSEFIAN BLAKSTVEDT 1
Taran YOUSSEFIAN BLAKSTVEDT
Psychologist

Portugal
Associação Nacional de Doentes Linfáticos (andLINFA)

Spain
Hospital Sant Joan de Déu Barcelona

VASCA European Reference Center, Dermatology Service

Marta LLORENS
Psychiatrist

Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)

Switzerland
HHT Swiss
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