United States

  • Arizona
  • California
  • Georgia
  • Maryland
  • Massachusetts
  • Michigan
  • Minnesota
  • Missouri
  • New Mexico
  • New York
  • North Carolina
  • Ohio
  • Pennsylvania
  • Utah
Barrow Neurological Institute, Phoenix
Contact: Shiza Shahid
Phone: 602-406-4117
Email: Shiza.Shahid@dignityhealth.org
University of California, San Francisco
Contact: Avery Lui
Phone: 415-476-2680
E-mail: Avery.Lui@ucsf.edu

University of California, Los Angeles
Contact: Victoria Rueda
Phone: 310-794-3546
E-mail: vrueda@mednet.ucla.edu
Georgia Health Sciences University, Augusta
Contact: Linda Jones, RN, BSN
Phone: 706-721-0193
E-mail: Linjones1@augusta.edu
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Hugo W. Moser Research Institute at Kennedy Krieger, Baltimore
 
Contact Information:

Anne M. Comi, MD Associate Professor, Neurology and Pediatrics
Director, Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute
Johns Hopkins Medicine
801 North Broadway
Baltimore, MD 21205
E-mail: comi@kennedykrieger.org

Kelly Harmon Research Assistant
Phone: 443-923-9127
E-mail: harmon@kennedykrieger.org

Alison Sebold Research Assistant
Phone: 443-923-9569
E-mail: sebold@kennedykrieger.org

 
Links:
Kennedy Krieger Institute
Johns Hopkins University, Baltimore
Contact: Doris Lin, M.D., Ph.D.
Phone: 443-287-3079
E-mail: ddmlin@jhmi.edu
Cure HHT, Monkton
Contact: Nicole Schaefer
Phone: 410-357-9932
E-Mail: nicole.schaefer@curehtt.org
Boston Children's Hospital, Boston
Contact: Amy Mason
Phone: 617-919-3499
E-mail: Amy.Mason@childrens.harvard.edu
Wayne State University, Detroit
Contact: Cynthia Burnett, MS
Phone: 313-993-3848
E-mail: cgburnet@med.wayne.edu
Mayo Clinic, Rochester
Contact: Sue Ann Donlinger
Phone: 507-284-9259
E-mail: donlinger.sueann@mayo.edu
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Washington University, St. Louis, MO
 
Contact Information:

Murali Chakinala, MD, FCCP
Principal Investigator
E-mail: mchakina@dom.wustl.edu

Sharron Heuermann, RN
314-747-8174
E-mail: sheuerman@dom.wustl.edu

Andrew White, MD
E-mail: white@kids.wustl.edu

 
Links:
The Hereditary Hemorrhagic Telangiectasia Center at the Washington University School of Medicine
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University of New Mexico, Health Sciences Center, Albuquerque, NM
 
Contact Information:

Atif Zafar, MD
Principal Investigator
E-mail: azafar@salud.unm.edu

Myranda Robinson
Study Coordinator
Phone: 505-272-3342
E-mail: mbrobinson@salud.unm.edu

 
Links:
The University of New Mexico Health Sciences Center
New York University Comprehensive Epilepsy Center, New York
Contact: Tobi Clement
Phone: 646-558-0877
E-mail: Oluwatobi.clement@nyumc.org
University of North Carolina, Chapel Hill
Contact: Karen L. Smith, RN
Phone: 919-966-2790
E-mail: karens@med.unc.edu

Angioma Alliance, Durham
Contact: Amy Akers
Phone: 757-818-0403
E-Mail: Amy.Akers@angioma.org

Duke University, Durham
Duke Eye Center
Contact: Sarah Jones
Phone: 919-681-6584
E-Mail: Sarah.jones1@duke.edu
Cincinnati Children's Hospital, Cincinnati
Contact: Paula Mobberley-Schuman, MS
Phone: 513-803-9255
E-mail: HVMCResearch@cchmc.org

Nationwide Children's Hospital, Columbus
Contact: Warren Lo, M.D.
Phone: 614-722-4625
E-mail: warren.lo@nationwidechildrens.org
Thomas Jefferson University – Wills Eye Institute, Philadelphia
Contact: Alex Levin, MD, MHSc
Phone: 267-733-9697
E-mail: alevin@willseye.org
University of Utah, Salt Lake City
Contact: Jamie McDonald, MS
For Scheduling: 866-292-4HHT
Direct Phone: 801-585-9702
E-mail: jamie.mcdonald@hsc.utah.edu

Canada

  • Ontario
Hospital for Sick Children, Toronto
Contact: Stephanie Jeanneret Manning
Phone: 416-813-4903
E-mail: stephanie.jeanneretmanning@sickkids.ca
 
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St. Michael’s Hospital, Toronto
 
Contact Information:

Marie E. Faughnan MD MSc FRCPC
Associate Professor, University of Toronto
St. Michael's Hospital, Respiratory Medicine
Director, Pulmonary Function Laboratory
Director, HHT Program
faughnanm@smh.ca

Dewi Clark
St. Michael's Hospital
30 Bond Street
Suite 6-049 CC
Toronto, M5B 1W8, Ontario
Phone: 416-864-6060 Ext. 2887
Fax: 416-864-5922
clarkde@smh.ca

 
Links:
St. Michael's Hospital

Europe

  • Netherlands
St. Antonius Hospital, Nieuwegein
Contact: Marleen Peterse- vanSchip
Phone: + 31 (0) 30 609 3459
E-mail: m.peterse@antoniusziekenhuis.nl