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Group members


Belgium
Ghent University Hospital

HTAD European Reference Center, Center for Medical Genetics 

Julie De BACKER 2
Pr. Julie De BACKER
Cardiologist and clinical geneticist

France
AP-HP – Hôpital Bichat-Claude Bernard

CRMR Marfan Syndrome and related disorders

Guillaume JONDEAU 2
Pr. Guillaume JONDEAU
Cardiologist

Association Marfans

Germany
Essen University Hospital

Essen Center for Rare Diseases 


Marfan Hilfe

Morbus Osler Selbsthilfe e.V

Italy
HHT Europe

Netherlands
St. Antonius Hospital

Dutch HHT expertise center

Hans-Jurgen MAGER
Dr. Hans-Jurgen MAGER
Pulmunologist

Radboud University Medical Center

Expert center for Hemangioma and Vascular Anomalies (Hecovan)

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

Portugal
Associação Nacional de Doentes Linfáticos (andLINFA)
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