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Home
About Us
Learn More
Disorder Definitions
FAQs
Glossary
Resources
Participating Clinical Centers
Get Involved
Studies
Patient Advocacy
Healthcare Professionals
Disorder Definitions
Diagnosis of the Porphyrias
Diagnostic Testing Laboratories
Pilot Projects
Publications
Contact Us
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Participating Clinical Centers
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Participating Clinical Centers
Icahn School of Medicine at Mount Sinai, New York, NY
Icahn School of Medicine at Mount Sinai
Address : Department of Genetics & Genomic Sciences
One Gustave L. Levy Place, Box 1497
New York, NY 10029
For clinical appointments : (212) 241-0915
Fax : (212) 426-9065
For study information contact the research coordinator.
Overall PC Principal Investigator
: Robert J. Desnick, PhD, MD
Dean for Genetic and Genomic Medicine
Professor and Chair Emeritus
Email :
robert.desnick@mssm.edu
Site Principal Investigator
: Manisha Balwani, MD, MS
Professor
Department of Genetics & Genomic Sciences
Email :
manisha.balwani@mssm.edu
Project Manager
: Karli Hedstrom, MPH
Phone : (212) 659-1450
Email :
karli.hedstrom@mssm.edu
Research Coordinator
: Nicole Gonzalez
Phone : (212) 659-1418
Email :
nicole.gonzalez@mssm.edu
University of Alabama at Birmingham, AL
University of Alabama
Address : Liver Center, Division of Gastroenterology and Hepatology, Department of Medicine
1808 7th Avenue South, BDB 815
Birmingham, AL 35294
For clinical appointments : (205) 996-4744
Fax : (205) 975-9777
Email :
porphyriacenter@uab.edu
Principal Investigator
: Brendan McGuire, MD
Professor of Medicine
Email :
bmcguire@uabmc.edu
Research Coordinator
: Angelia Johnson
Phone : (205) 934-0498
Email :
angeliajohnson@uabmc.edu
University of California at San Francisco, CA
University of California at San Francisco
Address : UCSF Porphyria Center
513 Parnassus Avenue
Room S357, Box 0538
San Francisco, CA 94143
For clinical appointments : (415) 353-2318
Fax : (415) 353-2407
Principal Investigator
: Bruce Wang, MD
Assistant Professor, Medicine
Email :
bruce.wang@ucsf.edu
Research Coordinator
: Janan Mohammady
Phone : (415) 476-8405
Email :
janan.mohammady@ucsf.edu
University of Miami, Miami, FL
University of Miami
Address : Schiff Center for Liver Diseases
1500 NW 12th Avenue, Suite #1101 ET
Miami, FL 33136
For clinical appointments : (305) 243-4615
Fax : (305) 243-6681
Principal Investigator
: Cynthia Levy, MD
Professor
Email :
CLevy@med.miami.edu
Research Coordinator
: Olivia Blust
Email :
oib5@med.miami.edu
University of Texas Medical Branch, Galveston, TX
University of Texas Medical Branch
Address : UTMB Porphyria Center
Department of Preventive Medicine and Community Health
301 University Boulevard
Galveston, TX 77555-1109
For clinical appointments : (409) 772-4661
Fax : (409) 772-6287
Email :
porphyria.center@utmb.edu
Principal Investigator
: Karl E. Anderson, MD
Professor
Director, UTMB Porphyria Center
Email :
kanderso@utmb.edu
Research Coordinator
: Csilla Hallberg, MD
Phone : (409) 747-4832
Email :
challberg@utmb.edu
University of Utah
University of Utah
Address : University of Utah Porphyria Center
Department of Internal Medicine, Division of Hematology
30 North 1900 E, Room #5C330 SOM, Hematology
Salt Lake City, UT 84132
For clinical appointments : (801) 585-3229
Fax : (801) 585-3432
Email :
porphyria.center@hsc.utah.edu
Principal Investigator
: John Phillips, PhD
Associate Professor, Division of Hematology
Associate Director, Core Laboratories
Email :
john.phillips@hsc.utah.edu
Investigator
: Charles Parker, MD
Professor, Internal Medicine
Clinical Porphyria Specialist
Email :
charles.parker@hsc.utah.edu
Research Coordinator
: Hina Yazdani
Phone : (801) 587-2506
Email :
hina.yazdani@hsc.utah.edu
University of Washington, Seattle, WA
University of Washington
Address : Department of Medicine, Division of Hematology
1705 NE Pacific Street
Seattle, WA 98195
For clinical appointments : (206) 288-1260
Fax : (216) 636-2627
For study information contact the research coordinator.
Principal Investigator
: Sioban Keel, MD
Associate Professor
Email :
sioban@u.washington.edu
Research Coordinator
: Niall Curely
Address : Seattle Cancer Care Alliance
825 Eastlake Ave E. MS: LV-107
Seattle WA 98109-1023
Phone : (206) 606-1231
Email :
Ncurley8@seattlecca.org
Research Coordinator
: Ryan Donnelly
Email :
rbd18@seattlecca.org
Wake Forest University Health Sciences, Winston-Salem, NC
Wake Forest University
Address : Wake Forest University Baptist Medical Center
Department of Gastroenterology
Medical Center Blvd
Winston-Salem, NC 27157
Section on GI
Nutrition Bldg. E
WFBMC, 1 Med Ctr Blvd
Winston-Salem, NC 27157
For clinical appointments : (336) 716-3636
Fax : (336) 713-7314
Principal Investigator
: Herbert L. Bonkovsky, MD
Professor, Internal Medicine/Gastroenterology
Email :
hbonkovs@wwakhealth.edu
Investigator
: Sean Rudnick, MD
Assistant Professor, Gastroenterology
Research Coordinator
: Dee Faust
Phone : (336) 713-1442
Email :
delannin@wakehealth.edu
Research Coordinator
: Amanda Grice
Phone : (336) 713-7316
Email :
agrice@wakehealth.edu
University of Illinois at Chicago
University of Illinois at Chicago
Address : 1818 W. Taylor Street, Suite 1E
Chicago, Illinois 60612
For clinical appointments : (312) 355-1625
Principal Investigator
: John G. Quigley, MD
Associate Professor of Medicine
Section of Hematology/Oncology (MC734)
Department of Medicine
University of Illinois at Chicago
Email :
seanq@uic.edu
Massachusetts General Hospital, Boston, MA
Massachusetts General Hospital
Address : Mass General Pulmonary & Critical Care
55 Fruit St.
Boston, MA 02114
For clinical appointments : (617) 726-1721
Principal Investigator
: Amy Dickey, MD
Email :
ADICKEY@mgh.harvard.edu
Research Coordinator
: Paul Jiang
Email :
PYJIANG@mgh.harvard.edu
University of Minnesota, Minneapolis, MN
University of Minnesota
Address : 420 Delaware Street SE
MMC 480
Minneapolis, MN 55455
Phone : (612) 624-5620
Principal Investigator
: Marshall Mazepa, MD
Assistant Professor of Medicine
Division of Hematology, Oncology, and Transplantation
Email :
mmazepa@umn.edu
Thomas Jefferson University, Philadelphia, PA
Thomas Jefferson University
Address : 132 South 10th Street
Suite 480
Philadelphia, PA 19107
For clinical appointments : (215) 955-8900
Principal Investigator
: Manish Thapar, MD
Associate Professor of Medicine
Center for Genetic & Metabolic Liver Disease
Email :
Manish.Thapar@jefferson.edu
Research Coordinator
: Cynthia Miller, RN
Email :
Cynthia.Miller@jefferson.edu
Phone : (215) 955-8108
Previous Clinical Centers
Carolinas Medical Center and HealthCare System, Charlotte, NC
Cleveland Clinic, Cleveland, OH