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Fabry Registry
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Board of Advisors

Scientific direction and monitoring recommendations are provided to the Fabry Registry by an independent group of physicians who have extensive experience in managing patients with Fabry disease. These physicians serve as primary liaisons between the Fabry community and the Fabry Registry in their geographic regions.

Some of the activities in which the Advisory Board are involved include:

  • developing recommendations for monitoring Fabry disease patients;
  • reviewing Fabry Registry Clinical Summary Reports and publications on Fabry disease;
  • developing new Case Report Forms (CRFs) to address specific unanswered clinical questions related to Fabry disease; and
  • consulting with other physicians and health care providers on the management of Fabry patients.

North American Board of Advisors
European Board of Advisors

International Board of Advisors


North American Board of Advisors

Dr. Ademola Abiose
Iowa University Health Center
Iowa City, IA

Dr. Maryam Banikazemi
New York University School of Medicine
New York, NY

Dr. John Barranger (Emeritus)
University of Pittsburgh Medical Center
Pittsburgh, PA

Dr. Daniel Bichet
Hopital du Sacre-Coeur de Montreal
Montreal, Canada

Dr. Joel Charrow
Children's Memorial Hospital
Chicago, IL

Dr. Lorne Clarke
British Columbia Research Institute for Child & Family Health
Vancouver, BC

Dr. Christine Eng
Baylor Colledge of Medicine
Houston, TX

Dr. Robert Hopkin
Cincinnati Children's Hospital Medical Centre
Cincinnati, OH

Dr. Manesh Patel
Duke University Medical Center
Durham, NC

Dr. C. Ronald Scott
University of Washington
Seattle, WA

Dr. Katherine Sims (Chair)
Massachusetts General Hospital
Boston, MA

Dr. David G. Warnock
University of Alabama @ Birmingham
Birmingham, AL

Dr. William Wilcox
Cedars Sinai Medical Center
Los Angeles, CA

European Board of Advisors

Dr. U. Feldt-Rasmussen
National University Hospital
Copenhagen, Denmark

Prof. D. P. Germain
Hôpital Raymond Poincaré
Garches, France

Dr. A. Fouilhoux
Hôpital Edouard Herriot
Lyon, France

Dr. L. Golan
General Hospital Charles University
Prague, Czech Republic

Dr. P. Lee (Chair)
National Hospital for Neurology & Neurosurgery
London, United Kingdom

Dr. G. Linthorst
Academisch Medisch Centrum
Amsterdam, Netherlands

Dr. J-E. Mansson
Sahlgren's University Hospital
Molndal, Sweden

Dr. J.P. Oliveira
Faculdade de Medicina da Universidade Do Porto
Porto, Portugal

Dr. A. Ortiz
Fundacion Jimenez Diaz
Madrid, Spain

Dr. J. Strotmann
I. Medizinische Klinik
Kiel, Germany

Prof. A. Tylki-Szymanska
Children's Memorial Health Institut
Warsaw, Poland

Prof. C. Wanner
Universitätsklinik Würzburg
Würzburg, Germany

Dr. S. Waldek
Hope Hospital
Manchester, United Kingdom

Dr. B. Vujkovac
General Hospital
Slovenj Gradec, Slovenia

International Board of Advisors

Dr. William Wilcox
Cedars Sinai Medical Centre
Los Angeles, CA

Prof. Dr. C. Wanner
Universitätsklinik Würzburg
Würzburg, Germany

Dr. Ana Maria Martins
Inatos do Metabolismo – CREIM
São Paulo, Brazil






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Your site may have the opportunity to submit data to the Fabry Registry electronically with the Electronic Data Capture and Reporting (EDCR) program. Contact the Registry for more information.

Related Links & Downloads

  Enrollment
  Registry Materials

  Fabry Protocol (PDF)
  Patient Authorization Form



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