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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

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

PPL European Reference Center, Expert Center for lymphovascular medecine

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

HHT European Reference Center, CRMR Rendu-Osler

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

HTAD European Reference Center, CRMR Marfan Syndrome and related disorders

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

MSA European Reference Center, Rare Vascular Diseases Reference Centre (CRMR)

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