The Communication Advisory Task Force meets biannually (or more if necessary) in order to discuss VASCERN’s communication strategy.

At these meetings the coordination team provides updates on the implementation, results, and activities of the communication strategy, and asks for feedback from members as well as answers any questions.

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BELGIUM

Ghent University Hospital, Ghent, Belgium

VASCERN HTAD European Reference Centre, Dept of Cardiology and Center for Medical Genetics 

Pr. Julie De BACKER
Cardiologist and clinical geneticist

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DENMARK

Pernille HENRIKSEN
Patient Advocate

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FRANCE

AP-HPHôpital Bichat-Claude Bernard, Paris, France

VASCERN HTAD European Reference Centre, CRMR MarfanSyndrome and related disorders, department of cardiology

Prof. Guillaume JONDEAU
Cardiologist

Marine HURARD
VASCERN Project Manager

Natasha BARR
VASCERN Project Officer

Karen DOUAD
VASCERN Project Assistant

Françoise STEINBACH
Patient Advocate

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GERMANY

Essen University Hospital, Essen, Germany

VASCERN HHT European Reference Centre – Essen Center for Rare Diseases 

Dr. Freya DROEGE
ENT Physician

Elena DE MOYA RUBIO
Patient Advocate

Christina GRABOWSKI
Patient Advocate

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ITALY

HHT Europe
Associazione Italiana Teleangectasia Emorragica – HHT ONLUS

Claudia CROCIONE
Patient Advocate

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NETHERLANDS

St. Antonius Hospital, Nieuwegein, The Netherlands

VASCERN HHT European Reference Centre –Dutch HHT expertise center

Dr. Hans-Jurgen MAGER
Pulmunologist

Radboud university medical center, Nijmegen, Netherlands

VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Dr. Carine VAN DER VLEUTEN
Dermatologist

Aaike VAN OORD
Patient Advocate

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PORTUGAL

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SPAIN

Juan LAMEIRO
Patient Advocate

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