Treatment Centers
* Quick Links: North American HHT Centers of Excellence, International HHT Treatment Centers, International Patient Support Groups
Click HERE to view the latest Guidelines for Becoming an HHT Center of Excellence
HHT Foundation and HHT Treatment Centers
Every year, the HHT Foundation receives phone calls, emails, and letters asking about the differences between the HHT Foundation and the HHT Centers of Excellence. On the surface, we may look and act as one entity but the reality is that we are completely separate institutions. Click HERE to read "A tale of separate institutions working toward a common goal". Click HERE to learn more about the HHT Foundation. The role of the HHT Treatment Center is defined below along with a full list of all HHT centers and patient associations around the world.
HHT Treatment Center of Excellence
An HHT Center of Excellence is defined as a medical practice that facilitates the comprehensive coordination of care necessary for treating a patient who has HHT. The standard of care must either meet or exceed the guidelines recognized by the HHT Foundation International, Inc.
The HHT Center will proactively manage the care of patients with HHT. A coordinated team of experts, knowledgeable about HHT, will collectively care for the patients seen at the Center. Ideally, a full-time nurse will work closely with the specialists to care for the patient. Usually there will be a coordinator on site to ensure proper follow up and coordination of patients care throughout the Center.
Each Center will provide medical services that are currently being provided at that facility, but will provide these services in a more organized and consistent fashion. The patient will have access to physicians who specialize in all aspects of HHT.
The HHT Foundation strongly encourages the HHT Centers to:
- Stay abreast of the latest treatments for the various aspects of HHT.
- Publish patient research results in appropriate medical journals and publications.
- Make available to HHT patients information on HHT and how to become a member of the Foundation.
- Complete an annual survey.
- Update the HHT Foundation of any changes in staffing, phone numbers, etc. that occur at the Center.
- Provide a copy of new journal publications that they have produced.
If this is your first visit to a Treatment Center, please review the link below to prepare for your visit.
There are many who want desperately to get to an HHT Treatment Center, but have financial limitations. Even if their insurance covers the cost of diagnosis and treatment, the cost of getting to one of the North American HHT Centers of Excellence can prove prohibitive. There is assistance available! Click on the link below for more information.
Charitable Medical Air Transportation
There is a foundation that can help with insurance issues. Click HERE for more information.
HHT TREATMENT CENTERS OF EXCELLENCE
(Click + to zoom in)
North American HHT Centers of Excellence
UNITED STATES
* NOSE Study Participating HHT Center
* Brain AVM Study Participating HHT Center
CLEVELAND CLINIC HHT CENTER
9500 Euclid Avenue
Cleveland, OH 44915
Contact: Svetlana Banjac, RN
Tel: 216-445-3636
Dr. Joseph Parambil, Director
FROEDTERT & MEDICAL COLLEGE OF WISCONSIN HHT CENTER
9200 West Wisconsin Avenue
Milwaukee, WI 53226
Contact: Jule Meddaugh
Tel: 414-805-3666 or 800-272-3666
Dr. Robert Krippendorf, Director
GEORGIA REGENTS UNIVERSITY HHT CENTER * *
(Formerly Medical College of Georgia)
Division of Pulmonary Medicine
1120 15th St. BBR 5513
Augusta, GA 30912-3135
USA
Contact: Janie Sims, RN
Tel: 706-721-0470
Fax: 706-721-2568
Email: jansims@gru.edu
Dr. James Gossage, Director
JOHNS HOPKINS HHT CENTER * *
Radiology and Radiological Science
600 North Wolfe Street / Blalock 544
Baltimore, MD 21287-4010
USA
Contact: Courtney Myles-Ross to schedule an appointment
Tel: 410-550-LUNG (5864)
Dr. Christian Merlo, Co-Director
Dr. Sally Mitchell, Co-Director
MAYO CLINIC HHT CENTER *
Division of Pulmonary & Critical Care Medicine
200 First Street S.W.
Rochester, MN 55905
USA
Contact: Dr. Karen Swanson; Dr. Michael J. Krowka (Co-Directors)
Tel: 507-266-0416
Fax: 507-266-4372
OREGON HEALTH & SCIENCE UNIVERSITY HHT CENTER * *
OHSU L-605
3181 S.W. Sam Jackson Park Rd.
Portland, OR 97239-3011
USA
Contact: Dr. Mark Chesnutt, Director
Tel: 888-222-6478 ext 7660 or 503-494-7660
Fax: 503-494-7664
UNIVERSITY OF ARKANSAS for MEDICAL SCIENCES (UAMS)
Division of Interventional Radiology
4301 W. Markham Street, #556
Little Rock, AR 72205-7199
USA
Contact: Teresa Harrington, RN
Tel: 501-416-9650
Dr. Michael Beheshti, Co-Director
Dr. Mollie Meek, Co-Director
Media Publications
UNIVERSITY OF CALIFORNIA at LOS ANGELES HHT CENTER * *
UCLA Radiology Consultation Center
100 Medical Plaza, Suite 100
Los Angeles, CA 90095
USA
Contact: Ronetta Jackson, HHT Center Administrative Assistant
Barbara Quinn, Nurse Practitioner / Coordinator
Tel: 310-481-7543
Dr. Justin McWilliams, Co-Director
Dr. Gary Duckwiler, Co-Director
Media Publications
UNIVERSITY OF CALIFORNIA at SAN DIEGO HHT CENTER
UCSD Medical Center
200 West Arbor Dr. 8756
San Diego, CA 92103
USA
Contact: Julie Fisher, HHT Clinic Coordinator
Tel: 619-543-7965 619-543-5670
Dr. Thomas Kinney, Director
UNIVERSITY OF NORTH CAROLINA at CHAPEL HILL HHT CENTER
UNC at Chapel Hill, Department of Radiology
516 Old Infirmary CB# 7510
101 Manning Drive
Chapel Hill, NC 27599-7510
USA
Contact: Karen Smith, RN
Tel: 919-966-2790
Dr. Raj Kasthuri, Director
UNIVERSITY OF PENNSYLVANIA *
Division of Medical Genetic
3400 Spruce Street, 1115 Penn Tower
Philadelphia, PA 19104-4283
USA
Contact: Rachel Kline, Clinic Coordinator
Tel: 215-662-4740
Fax: 215-614-0298
Dr. Reed Pyeritz, Co-Director
Dr. Scott Trerotola, Co-Director
Genetic Diagnostic Laboratory - www.med.upenn.edu/gdl
UNIVERSITY OF TEXAS - SOUTHWESTERN
University of Texas Southwestern Medical School
5939 Harry Hines Boulevard
POB 2, Suite 630
Dallas, TX 75390-9198
USA
Contact: David Clark
Tel: 214-645-2100
Dr. Daniel Goodenberger, Director
UTSW Guest and Patient Services: 214-645-2393 to obtain hotel and amenity arrangements (i.e., wheelchairs, escorts, and other concierge services
UNIVERSITY OF UTAH MEDICAL CENTER * *
50 North Medical Drive
HHT Clinic/1A71 SOM
Salt Lake City, UT 84132
USA
Contact: Amy Langston, Clinic Coordinator
Tel: 801-581-8188 (tollfree 866-292-4HHT)
Fax: 801-581-2414
Jamie McDonald, MS, LGC, Co-Director
Dr. Kevin Whitehead, Co-Director
WASHINGTON UNIVERSITY SCHOOL OF MEDICINE * *
660 South Euclid Avenue
St. Louis, MO 63110-1093
USA
Contact: Dr. Murali Chakinala; Co-director (Adults)
Tel: 877-888-5864 or 314-454-8917
Contact: Dr. Andy White; Co-director (Pediatrics)
Tel: 314-454-2479
Contact: Dr. Jay Piccirillo (ENT)
Tel: 314-362-8641
Media Publications
- Outlook - HHTeam
YALE UNIVERSITY SCHOOL OF MEDICINE *
Department of Diagnostic Radiology
P.O. Box 208042
789 Howard Avenue, Room CB225
New Haven, CT 06520
USA
Contact: Nathan Clark
Tel: 203-737-5395
Fax: 203-737-5394
Robert I. White, Jr., MD; Medical Director
Katharine Henderson, MS, CGC; Co-Director
Jeffrey Pollak, MD; Co-Director
CANADA
TORONTO HHT NETWORK *
St. Michael's Hospital
6 Bond St., Room 6049
Toronto, ON M5B 1W8
CANADA
Adult HHT & Pulmonary AVM Center *
Contact: Rose Pantalone for Dr. Marie Faughnan, Director
Tel: 416-864-6060 ext. 2407
Pediatric HHT Clinic *
Director: Dr. Felix Ratjen
Hospital for Sick Children
Tel: 416-813-5837 (contact: Susan Carpenter)
HHT Genetics Team
The Hospital for Sick Children
Division of Clinical & Metabollic Genetics
555 University Ave.
Toronto, ON M5G1X8
Canada
Contact: Ms. Regan Klatt, MS, CGC; Vice-Director
Tel: 416-813-6389
Fax: 416-813-5345
Brain AVM Clinic *
University Health Network
Dr. Karel terBrugge, Interventional Neuroradiologist
Tel: 416-603-5266
http://brainavm.uhnres.utoronto.ca/support_group/index.htm
EDMONTON HHT CENTRE *
2E4.26 Walter Mackenzie Centre - University of Alberta
8440 112 Street
Edmonton, AB T6G 2B7
CANADA
Contact
Dr. Richard Owen, Co-Director
Dr. Dilini Vethanayagam, Co-Director
Tel: 780-407-1479
Fax: 780-407-6384
MONTREAL HHT CENTRE
CHUM, Hotel Dieu
3840 St - Urbain
Montreal, QC H2W 1T8
CANADA
Contact: Anouk Gackowski for Dr. Marie Faughnan
Tel: 514-890-8000 local 15672
Fax: 514-412-7123
Patient Support Group: http://hhtcanada.com
Isabelle Choquet-Goulet, President
International HHT Treatment Centers
HHT CENTER ARGENTINA
Servico de Clinica Medica
Hospital Italiano de Buenos Aires
Coordinador Clinico Unidad de Rendu Osler Weber/HHT
Gascon 450, CP 1181 CABA Argentina
Contact: Dr. Marcelo Serra
Tel: (11) 4959-0200
Intl: 8201/8868/5377
www.hospitalitaliano.org.ar/renduoslerweber/
HHT CENTER CHINA
Department of Radiology
The Institute of Vascular Interventional Radiology
The First Affiliated Hospital of China Medical University
No. 155, Nanjing Bei Street
Shenyang, CHINA 110001
Contact: Dr. Hongshan Zhong & Dr. Ke Xu
Tel: 86-24-832-82447
Fax: 86-24-83282629
HHT CENTER DENMARK
Odense University Hospital
Dept. of Otorhinolaryngology
Sdr Boulevard 29
5000 Odense C
DENMARK
Contact: Dr. Anette Kjeldsen
Tel: 045-6320-2120 or 045-6320-2127
Patient Support Group: www.osler.dk
HHT CENTER ENGLAND - LONDON
Hammersmith Hospital
DuCane Road
London, ENGLAND W12 ONN
Contact: Georgina Rudd for Dr. Claire Shovlin
Tel: 44-208-383-4831
Contact: Dr. James Jackson (Secretary Pamela Brayshay)
Tel: 44-208-383-3485
Patient Support Group (TSHG): www.telangiectasia.co.uk
Contact: Diana Lawson
39 Sunny Croft Downley
High Wycombe, Bucks ENGLAND HP13 5UQ
HHT CENTER ENGLAND - HULL / NORTHEAST
Hull Royal Infirmary
Anlaby Rd
Hull, ENGLAND HU3 2JZ
Contact: Mrs. Hilary Finnis and Dr. Graham Robinson
Tel: 44(0) 1482-674608
Patient Support Group (TSHG): www.telangiectasia.co.uk
HHT CENTER FRANCE - LYON
Service de Genetique
Hotel Dieu
Quai Jules Courmont
69288 Lyon Cedex 02 FRANCE
Contact: Professor Henri Plauchu
Tel: 4-72-413295
Fax: 4-72-413146
Patient Support Group: www.amro-france.org
HHT CENTER FRANCE - PARIS
Consultation Pluridisciplinaire Maladie de Rendu-Osler
Hopital Ambrose Pare
9, Avenue Charles de Gaulle
92104 Boulogne Billancourt Cedex FRANCE
Contact: Benedicte Chesneau
Tel: 33 1 49094432
Patient Support Group: www.amro-france.org
HHT CENTER GERMANY – COLOGNE
Kliniken der Stadt Koeln / Hospitals of the City of Cologne
Krankenhaus Holweide / Holweide Hospital
HNO – Abteilung / Department of Otorhinolaryngology
Neufelder Str. 32
D-51067 Koeln GERMANY
Contact: Dr. Urban Geisthoff
Tel: 49-221-8907-12727
Fax: 49-221-8907-2730
Patient Support Group: http://www.morbus-osler.de
HHT CENTER GERMANY - HOMBURG
Univ. HNO-Klinik
Kirrberger Strasse
D-66421 Homburg
Saar, 49 GERMANY
Contact: Dr. Urban W. Geisthoff
Tel: 49-221-8907-12727
Fax: 49-221-8907-2730
Patient Support Group: http://www.morbus-osler.de
HHT CENTER GERMANY - MARBURG
Philipps-University Marburg
Department of Otorhinolaryngology
Deutschhausstrasse 3
D-35037 Marburg
GERMANY
Contact: Suzanne Zapf for Prof. Dr. Werner
Tel: 49-6421-2866808
Fax: 49-6421-2866367
Patient Support Group: http://www.morbus-osler.de
HHT CENTER GERMANY-LIPPSPRINGE
Department of Otolaryngology
Head and Neck Surgery
Karl-Hansen Medical Center
Antoniusstr. 19
D-33175 Bad Lippspringe GERMANY
Contact: Dr. Benedikt J. Folz
Tel: 49-5252-954302
Fax: 49-5252-954350
Patient Support Group: http://www.morbus-osler.de
HHT CENTER IRELAND
Mercy University Hospital
Grenville Place
Cork, IRELAND
Contact: Margaret Murphy & Dr. Adrian Brady
Tel: 353-21-2305040
Patient Support Group:
Grace Nolan Foundation at www.Gracenolan.com
HHT CENTER ISRAEL
Schneider Children's Medical Center of Israel
Rabin Medical Center, Tel Aviv University
14 Kaplan St. , Petach Tikwa
HHT clinic, Respiratory Division
Tel Aviv, ISRAEL
Contact: Dr. Meir Mei-Zahav, Director
Tel: 972-3-9253654
Fax: 972-3-9253308
Patient Support Group: Meira Heiman, President
Tel: 972-050-6-417187
Email: heimann@netvision.net.il
HHT CENTER ITALY - NORTHERN
HHT Clinical Team
U.O di Gastroenterologia ed Endoscopia Digestiva
Ospedale Maggiori
Largo Dossena 2
Crema, 26103 ITALY
Contact: Dr. Elisabetta Buscarini
Tel: 0039-0373-280422/280726 (secretary)
Fax: 0039-0373-280654
HHT Genetics Team
Universita di Pavia
Genetica Medica
Via Forlanini 14
Pavia, 27100 ITALY
Contact: Professor Cesare Danesino
Tel: 0039-0382-507737
Fax: 0039-0382-525030
Patient Support Group:
Fondazione Italiana HHT http://www.hht.it
HHT CENTER ITALY - SOUTHERN
University of Bari
Dipartimiento di Medicina Interna e Medicina Pubblica
Universita Policlinico
Piazza G. Cesare, Bari 70124 ITALY
Contact: Professor Carlo Sabba, M.D.
Tel/Fax: 39-080-5478708
Patient Support Group: info@.hhtonlus.com
HHT CENTER JAPAN
Akita University School of Health Services
Department of Physical Therapy
1-1-1 Hondo, Akita, 010-8543 JAPAN
Contact: Dr. Takanobu Shioiya
Tel: 81-18-834-111 Ext. 6531
Fax: 81-18-884-6500
HHT CENTER NETHERLANDS
St. Antonius Ziekenhuis
Koekoekslaan 1
3435 CM Nieuwegein, THE NETHERLANDS
Contact: Dr. Hans Jurgen Mager
Appointments: Mrs. Elly Vermorken
Tel: 31-30-609-2428
HHT CENTER NORWAY
Rikshospitalet University Hospital
Oslo, NORWAY
Contact: Dr. Ketil Heimdal
Tel: 47-2307-5593
Fax: 47-2307-5590
HHT CENTER SPAIN
Hospital Sierrallana (Servicio Cantabro de Salud)
Servicio de Medicina Interna
Barrio Ganzo s/n
39300 Torrelavega (Cantabria) SPAIN
Contact: Dr. Roberto Zarrabeitia
Contact: Dr. Perez del Molino
Tel: 34-942-847400 (8053)
Fax: 34-942-847501
Patient Support Group: www.asociacionhht.org or renduosler@asociacion-hht.org
INTERNATIONAL PATIENT SUPPORT GROUPS
International Patient Support Groups
ARGENTINA
horacio@escribaniachiesa.com.ar
Coordinator: Horacio Chiesa
CANADA
http://hhtcanada.com
President: Isabelle Choquet-Goulet
DENMARK
http://www.osler.dk
erik@mohr.nu
Coordinator: Erik Mohr
ENGLAND
www.telangiectasia.co.uk
Coordinator: Diana Lawson
39 Sunny Croft Downley
High Wycombe Buck, ENGLAND HP13 5UQ
Web Monitor: Matt Flectcher
info@telangiectasia.co.uk
FRANCE
http://www.amro-france.org
Dominique Cortadellas, Patient Education Liaison Email: amrofrance@aliceadsl.fr
GERMANY
Morbus-Osler-Selbsthilfe at http://www.morbus-osler.de
IRELAND
Grace Nolan Foundation at www.Gracenolan.com
ISRAEL
The HHT Patient Association in Memory of B. Getz
President: Meira Heiman
Tel: 972-050-6-417 187
Email: heimann@netvision.net.il
ITALY
Fondazione Italiana HHT
Email: informazioni@hht.it.
http://www.hht.it
HHT Onlus-Associazione Italiana
www.hhtonlus.com
SPAIN & PORTUGAL Patient Support Group
www.asociacionhht.org or renduosler@asociacion-hht.org
SWEDEN
http://www.osler.se
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