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Home - Network - Rare Disease Working Groups - Vascular Ehlers-Danlos syndr. (MSA-WG) - Experts & Centers - Full Members
Vascular Ehlers-Danlos syndr. (MSA-WG)
Introduction Diseases covered
Experts & Centers
Full Members Developing Partners Map of Centers
Clinical Decision Support Tools
Patient Pathways Do’s and Don’ts Clinical Practice Guidelines (CPGs) adopted Clinical Expert Consensus Statements Written Clinical Outcome Measures
Registry
Research
Clinical Trials/Observational Studies Research Publications
Training and Education
E-Learning Pills of Knowledge (PoK) Webinars

Full Members

Working Group Leads

Michael FRANK
Chair
Dr. Michael FRANK
Consultant Cardiologist
Pubmed

Members

Belgium
Ghent University Hospital, Ghent

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
Antwerp University Hospital, 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, Aarhus

HTAD & MSA European Reference Center, Heart Disease Clinic

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, Paris

MSA European Reference Center, Reference Center for Rare Arterial Diseases

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, Rotterdam

MSA European Reference Center, Department of Clinical Genetics

Ingrid VAN DE LAAR 1
Dr. Ingrid VAN DE LAAR
Clinical Geneticist
Pubmed
Norway
Oslo University Hospital, Oslo

MSA European Reference Center, Department of Physical Medicine and Rehabilitation

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

MSA European Reference Center, Department of Medical Sciences

Anders WANHAINEN 1
Dr. Anders WANHAINEN
Vascular Surgeon
Pubmed

Collaborating HCPs since Brexit

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

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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