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Vascular Ehlers-Danlos syndr. (MSA-WG)
Introduction Diseases covered
Experts & Centers
Experts Centers
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Experts

Michael FRANK
Chair
Dr. Michael FRANK
Consultant Cardiologist
Pubmed

HEALTHCARE PROVIDER (HCP) FULL MEMBERS

Belgium
Ghent University Hospital

MSA European Reference Center, Center for Medical Genetics 

Fransiska MALFAIT 1
Dr. Fransiska MALFAIT
Clinical geneticist
Pubmed
Laura Muino
Dr. Laura MUIÑO MOSQUERA
Pediatric Cardiologist and Cardiogeneticist
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 Européen Georges Pompidou

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

Michael FRANK
Dr. Michael FRANK
Consultant Cardiologist
Pubmed
Tristan MIRAULT 2
Pr. Tristan MIRAULT
Professor of Vascular Medicine
Pubmed
Association Française des Syndromes d’Ehlers Danlos (AFSED)
Netherlands
Erasmus University Medical Center

MSA European Reference Center, Department of Clinical Genetics and Cardiology

Ingrid VAN DE LAAR 1
Dr. Ingrid VAN DE LAAR
Clinical Geneticist
Pubmed
Norway
Oslo Universitetssykehus

MSA European Reference Center, Department for Physical Medicine and Rehabilitation

Nina RIISE 5
Dr. Nina RIISE
Rehabilitation Medicine
Pubmed
Dr. Thy Thy VANEM
Physical Medicine and Rehabilitation Specialist
Pubmed
Spain
ANSEDH – Spanish National Patient Organization for Ehlers-Danlos
Sweden
Uppsala University Hospital

MSA European Reference Center, Department of Medical Sciences

Anders WANHAINEN 1
Dr. Anders WANHAINEN
Vascular Surgeon
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

Collaborating HCPs since Brexit

United Kingdom
Guy’s and St Thomas’ NHS Foundation Trust

South East Thames Regional Genetics Service

Leema ROBERT 1
Dr. Leema ROBERT
Consultant Clinical Genetist – MSA Chair 2017-2021 and Collaborating Expert
Pubmed
Yaso EMMANUEL
Dr. Yaso EMMANUEL
Consultant Cardiologist – Collaborating Expert
Pubmed
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