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Marfan, Loeys-Dietz syndr…(HTAD-WG)
Introduction
Disease Information
Overview Genetic Testing for Hereditary Thoracic Aortic Aneurysm Disease Familial Thoracic Aortic Aneurysm and Dissection (Familial TAAD) Marfan Syndrome
Experts & Centers
Experts Centers
Clinical Decision Support Tools
Patient Pathways Do’s and Don’ts Clinical Practice Guidelines (CPGs) adopted Clinical Expert Consensus Statements Written Outcome Measures
Registry by The Registry WG
Research
Clinical Trials/Observational Studies Research Publications
Training and Education
E-Learning Pills of Knowledge (PoK) Webinars
Sub Working Groups
Aortic Imaging Gene Compendium Pediatrics Variants

Experts

Marlies KEMPERS
Chair
Dr. Marlies KEMPERS
Clinical Geneticist
Pubmed
Guillaume JONDEAU 2
Co-Chair
Pr. Guillaume JONDEAU
Cardiologist
Pubmed

HEALTHCARE PROVIDER (HCP) FULL 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
Pubmed
Liesbeth WILDERO VAN WOUWE 1
Liesbeth WILDERO VAN WOUWE
Genetic Couselor
Pubmed
University Hospital of Antwerp

HTAD & MSA European Reference Center, Center of Medical Genetics 

Bart LOEYS 2
Pr. Bart LOEYS
Clinical cardiogeneticist
Pubmed
Aline VERSTRAETEN 2
Dr. Aline VERSTRAETEN
Clinical geneticist
Pubmed
Denmark
Aarhus University Hospital

HTAD & MSA European Reference Center, Department of Clinical Medicine

Dorte Gulbrand NIELSEN 9
Dr. Dorte Gulbrand NIELSEN
Cardiologist
Pubmed
Pernille GREGERSEN 1
Dr. Pernille GREGERSEN
Clinical Associate Professor
Pubmed
France
AP-HP Hôpital Bichat – Claude-Bernard

HTAD European Reference Center, CRMR Marfan Syndrome and related disorders

Guillaume JONDEAU 2
Pr. Guillaume JONDEAU
Cardiologist
Pubmed
Olivier MILLERON 1
Dr. Olivier MILLERON
Cardiologist
Pubmed
Germany
University Medical Center Hamburg-Eppendorf

HTAD European Reference Center, University Heart Center Hamburg

Yskert VON KODOLITSCH
Pr. Yskert VON KODOLITSCH
Cardiologist
Pubmed
Meike Rybczynski
Dr. Meike RYBCZYNSKI
Cardiologist
Pubmed
Marfan Hilfe
Hungary
Semmelweis University

HTAD European Reference Center, Heart and Vascular Center

Zoltan SZABOLCS 1
Pr. Zoltan SZABOLCS
Cardiac Surgeon
Pubmed
Kalman BENKE 1
Dr. Kalman BENKE
Cardiac surgeon
Pubmed
Italy
Careggi University Hospital

HTAD European Reference Center, Regional Tuscany Reference Center for Marfan Syndrome and related disorders

Betti GIUSTI
Dr. Betti GIUSTI
Molecular Biologist
Pubmed
Fondazione IRCCS Policlinico San Matteo Pavia

HTAD European Reference Center, Center for Inherited Cardiovascular Diseases

Eloisa ARBUSTINI
Pr. Eloisa ARBUSTINI
Geneticist
Pubmed
Alessandro DI TORO 1
Dr. Alessandro DI TORO
Physician/Researcher
Pubmed
Netherlands
Amsterdam University Medical Center

HTAD European Reference Center, Department of Cardiology

Maarten GROENINK
Pr. Maarten GROENINK
Cardiologist
Pubmed
Marieke BAARS
Dr. Marieke BAARS
Clinical Geneticist
Pubmed
Erasmus University Medical Center

HTAD European Reference Center, Department of Clinical Genetics and Cardiology

Ingrid VAN DE LAAR 1
Dr. Ingrid VAN DE LAAR
Clinical Geneticist
Pubmed
Martijn KAULING
Dr. Martijn KAULING
Congenital Cardiologist
Pubmed
Radboud University Medical Center

HTAD European Reference Center, Department of Clinical Genetics

Marlies KEMPERS
Dr. Marlies KEMPERS
Clinical Geneticist
Pubmed
Roland VAN KIMMENADE
Dr. Roland VAN KIMMENADE
Cardiologist
Pubmed
Norway
Oslo Universitetssykehus

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

Kirsten KROHG-SøRENSEN
Dr. Kirsten KROHG-SøRENSEN
Vascular Surgeon
Pubmed
Benedicte PAUS 1
Pr. Benedicte PAUS
Medical Professor
Pubmed
Spain
Hospital Universitari Vall d’Hebron

HTAD European Reference Center, Cardiology Unit

Gisela TEIXIDÓ
Dr. Gisela TEIXIDÓ
Cardiologist
Pubmed
Anna Sabate Rotes
Dr. Anna SABATE ROTES
Pediatric Cardiologist
Pubmed
Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)
Sweden
Karolinska University Hospital

VASCA European Reference Center, Department of Reconstructive Plastic Surgery

Erik BJORCK
Dr. Erik BJORCK
Clinical Geneticist
Pubmed

Affiliated Partners

There are 2 types of affiliated partners:

  1. Associated National Centres (mainly healthcare providers) for those ERNs where an EU Member State is not yet represented by a full member in the respective ERN. It establishes a link with one specific ERN.
  2. A National Coordination Hub which establishes at once a link with more than one Network in which a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs may especially represent a useful solution for those Member States with very small populations that need to establish such links with many ERNs at once.

For all documents related to Affiliated Partners see the Board Statement States page here

Associated National Centers

Austria
Medical University of Innsbruck

HTAD European Reference Center, Center for Genetic Aortopathies / Department of Cardiac Surgery

Julia DUMFARTH
Dr. Julia DUMFARTH
Cardiac Surgeon
Pubmed
Cyprus
The Cyprus Institute of Neurology and Genetics

HTAD European Reference Center, Department of Cardiovascular Genetics & Laboratory of Forensic Genetics

Evy BASHIARDES
Dr. Evy BASHIARDES
Molecular Biologist
Pubmed
Anna KERAVNOU
Dr. Anna KERAVNOU
Molecular Biologist
Pubmed

National Coordination Hubs

Luxembourg
Centre Hospitalier de Luxembourg

HTAD European Reference Center, Department of Cardiac Surgery

Klaus KALLENBACH
Pr. Klaus KALLENBACH
Cardiac Surgeon
Pubmed
Malta
Mater Dei Hospital

HTAD European Reference Center, Department of Cardiology

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