United States

  • Arizona
  • California
  • Colorado
  • Connecticut
  • Georgia
  • Illinois
  • Maryland
  • Massachusetts
  • Michigan
  • Minnesota
  • Missouri
  • New Mexico
  • New York
  • North Carolina
  • Ohio
  • Utah
Barrow Neurological Institute, Phoenix
Contact: Oscar Cisneros, Research Coordinator
Phone: 602-406-3624; 602-406-6227
E-mail: Oscar.Cisneros@barrowneuro.org
Michael T. Lawton, MD, Principal Investigator
Email: Michael.Lawton@barrowbrainandspine.com
University of California, San Francisco
6211: Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
Contact: Mateo Ortiz Ambrosio, BS, Research Coordinator
Phone: 415-476-2680
E-mail: CCRStudy@ucsf.edu
Helen Kim, MPH, PhD, Principal Investigator
E-mail: Helen.Kim2@ucsf.edu
 
6203: Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia
Nhu Kim Huynh, BS, Research Coordinator
Phone: 415-502-6192
E-mail: Nhu.Huynh@ucsf.edu
Steven Hetts, MD, Principal Investigator
E-mail: Steven.Hetts@ucsf.edu
Helen Kim, MPH, PhD, Co-Investigator
E-mail: Helen.Kim2@ucsf.edu

University of California, Los Angeles
Contact: Victoria Rueda
Phone: 310-794-3546
E-mail: vrueda@mednet.ucla.edu
Justin McWilliams, MD, Principal Investigator
E-mail: JuMcWilliams@mednet.ucla.edu
University of Colorado, Denver
Contact: Jordan Stumph, MPH, Research Coordinator
Phone: 303-724-6052
E-mail: Jordan.Stumph@cuanschutz.edu
Peter Hountras, MD, Principal Investigator
Email: Peter.Hountras@gmail.com
Yale University School of Medicine, New Haven
Contact: Katharine Henderson, MS, Study Coordinator
Phone: 203-737-1427
E-mail: Katharine.Henderson@yale.edu
Jeffrey Pollak, MD, Principal Investigator
Email: Jeffrey.Pollak@yale.edu
Georgia Health Sciences University, Augusta
Contact: Reeya Patel, BS, Study Coordinator
Phone: 706-721-9680
E-mail: RPatel6@augusta.edu
James R. Gossage, MD, Principal Investigator
E-mail: JGossage@augusta.edu
University of Illinois at Chicago, Chicago
Contact: Veronica Stanton, DNP, RN, CPNP-PC, Research Coordinator
Phone: 312-996-1757
Jeffrey Loeb, MD, PhD, Principal Investigator
E-mail: JALoeb@uic.edu
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Hugo W. Moser Research Institute at Kennedy Krieger, Baltimore
 
Contact Information:

Kennedy Krieger Institute
Johns Hopkins Medicine
801 North Broadway
Baltimore, MD 21205
SangEun (Elly) Yeom, Research Coordinator
Phone: 443-923-9127
E-mail: SturgeWeber@kennedykrieger.org
Anne M. Comi, MD Principal Investigator
E-mail: Comi@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
6201: Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformation
Contact: Adam Porter, MPH, Compliance Coordinator
Phone: 617-919-6013
E-mail: Adam.Porter@childrens.harvard.edu
Edward R. Smith, MD, Principal Investigator
E-mail: Edward.Smith@childrens.harvard.edu
6211: Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
Isabelle Iannotti, Research Coordinator
Phone: 616-919-7623
E-mail: Isabelle.Iannotti@childrens.harvard.edu
Anna Pinto, MD, PhD, Principal Investigator
E-mail: Anna.Pinto@childrens.harvard.edu
Wayne State University, Detroit
Csaba Juhasz, Principal Investigator
Phone: 313-966-5136
E-mail: Csaba.Juhasz@wayne.edu
Contact: Aimee Luat, Site Investigator
E-mail: ALuat@dmc.org
Mayo Clinic, Rochester
Contact: Vivek N. Iyer, MD, MPH, Principal Investigator
E-mail: Iyer.Vivek@mayo.edu
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Washington University, St. Louis, MO
 
Contact Information:

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

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

Andrew White, MD, Co-Investigator
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:

Dawn Aldridge, RN
Nurse Clinical Research Coordinator
Phone: 505-272-3194
E-mail: DAldridge@salud.unm.edu


6201: Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformation
Michel Torbey, MD, MPH, Principal Investigator
E-mail: MTorbey@salud.unm.edu
6211: Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
Hae Won Shin, MD, Principal Investigator
E-mail: Hashin@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 Rochester, New York
Contact: Alex V. Levin, MD, MHSc, FAAP, FAAO, FRCSC
For patient related matters: Phone 585-275-4141, Fax 585-276-0324
For all other matters: Phone 585-276-5036, Fax 585-276-2517
E-mail: alex_levin@urmc.rochester.edu
University of North Carolina, Chapel Hill
Contact: Karen L. Smith, RN, Nurse Clinical Research Coordinator
Phone: 919-966-2790
E-mail: KarenS@med.unc.edu
Raj Kasthuri, MD, Principal Investigator
E-mail: Raj_Kasthuri@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
6201: Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformation
Contact: Sarah Mierke, MS, Research Coordinator
Phone: 513-659-9747
E-mail: Sarah.Mierke@cchmc.org
Sudhakar Vadivelu, DO, Principal Investigator
E-mail: Sudhakar.Vadivelu@cchmc.org
6203: Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia
6211: Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
Megan Metcalf, BS, Research Coordinator
Phone: 513-636-4266
E-mail: Megan.Metcalf@cchmc.org
Adrienne Hammill, MD, PhD, Principal Investigator
E-mail: Adrienne.Hammill@cchmc.org

Nationwide Children's Hospital, Columbus
Contact: Ashley Young, Research Coordinator
E-mail: Ashley.Young@nationwidechildrens.org
Warren Lo, MD, Principal Investigator
Phone: 614-722-4625
E-mail: Warren.Lo@nationwidechildrens.org
 
University of Utah, Salt Lake City
Contact: Grecia Gutrierrez, Study Coordinator
E-mail: Grecia.Gutrierrez@hsc.utah.edu
Kevin Whitehead, MD Principal Investigator
E-mail: kevin.whitehead@hsc.utah.edu

Canada

  • Ontario
Hospital for Sick Children, Toronto
Contact: Jackie Au, Research Coordinator
Phone: 416-813-7654 EXT: 309982
E-mail: Jackie.Au@sickkids.ca
Felix Ratjen, MD, PhD, FRCP, (C)FERS, Principal Investigator
E-mail: Felix.Ratjen@sickkids.ca
 
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St. Michael’s Hospital, Toronto
 
Contact Information:

Negar Bagheri, MSc, Senior Study Coordinator
Phone: 416-864-6060
E-mail: Negar.Bagheri@unityhealth.to
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

 
Links:
St. Michael's Hospital

Europe

  • Netherlands
St. Antonius Hospital, Nieuwegein
Contact: Marleen Peterse- van Schip, Study Coordinator
Phone: + 31 (0) 30 609 3459
E-mail: M.Peterse@antoniusziekenhuis.nl
J.J. Hans-Jurgen Mager, MD, Principal Investigator
E-mail: J.Mager@antoniusziekenhuis.nl