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Registry
Introduction Registry Registry WG
Sub-registries
Hereditary Haemorrhagic Telangiectasia Registry Heritable Thoracic Aortic Diseases Registry Medium Sized Arteries Registry Neurovascular Diseases Registry Pediatric and Primary Lymphedema Registry Vascular Anomalies Registry

Registry WG

Leo SCHULTZE KOOL 23
Chair
Pr. Leo SCHULTZE KOOL
Interventional Radiologist
Pubmed
Guillaume JONDEAU 2
Co-Chair
Pr. Guillaume JONDEAU
Cardiologist
Pubmed
Netherlands
Radboud University Medical Center, Nijmegen

VASCA European Reference Center, Expertise Center for Hemangiomas and Congenital Vascular Abnormalities (Hecovan)

Leo SCHULTZE KOOL 11
Pr. Leo SCHULTZE KOOL
VASCA-WG Co-Chair and VASCA Registry Lead
Pim KAMERLING
Pim KAMERLING
VASCERN Data Steward
Bruna DOS SANTOS VIEIRA
Bruna DOS SANTOS VIEIRA
VASCA Registry Data Steward
Nij Smellinghe Hospital, Drachten

PPL European Reference Center, Expertise Center for Lymphovascular Medicine

Robert J. DAMSTRA 17
Dr. Robert J. DAMSTRA
PPL-WG Chair and PPL Registry Lead
Germany
Marfan Hilfe
France
Hôpital Femme Mère Enfant – HCL, Bron

HHT European Reference Center, Rendu-Osler Disease Reference Center

Sophie DUPUIS-GIROD 117
Dr. Sophie DUPUIS-GIROD
HHT-WG Chair and HHT Registry Lead
Evelyne DECULLIER
Registry Project Manager
Jean-Philippe ALLARD
Registry Developer
AP-HP Hôpital Bichat – Claude-Bernard, Paris

HTAD European Reference Center, Reference center for Marfan syndrome, related diseases and rare aortic diseases

Guillaume JONDEAU 2
Pr. Guillaume JONDEAU
VASCERN Coordinator, HTAD-WG Co-Chair and HTAD Registry Lead
AP-HP Hôpital Européen Georges Pompidou, Paris

MSA European Reference Center, Reference Center for Rare Arterial Diseases

Michael FRANK 1
Dr. Michael FRANK
MSA-WG Chair and MSA vEDS Registy Lead
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