Hereditary Hemorrhagic Telangiectasia – Osler-Weber-Rendu

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:

  1. Stay abreast of the latest treatments for the various aspects of HHT.
  2. Publish patient research results in appropriate medical journals and publications.
  3. Make available to HHT patients information on HHT and how to become a member of the Foundation.
  4. Complete an annual survey.
  5. Update the HHT Foundation of any changes in staffing, phone numbers, etc. that occur at the Center.
  6. 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.

Steps for Families New to HHT

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

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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

Cleveland Clinic Article

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

Froedtert HHT Website

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

GRU HHT Website

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

Johns Hopkins HHT Website

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

OHSU HHT Website

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

UAMS Health

 

UNIVERSITY OF CALIFORNIA at LOS ANGELES HHT CENTER * *
UCLA Radiology Consultation Center
100 Medical Plaza, Suite 100
Los Angeles, CA  90095
USA

UCLA HHT Website

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

UCSD HHT Website

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

UPenn Area HOTELS

 

UNIVERSITY OF TEXAS - SOUTHWESTERN
University of Texas Southwestern Medical School
5939 Harry Hines Boulevard
POB 2, Suite 630
Dallas, TX  75390-9198
USA

UTSW HHT Website

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

UTSW Area HOTELS

 

UNIVERSITY OF UTAH MEDICAL CENTER * *
50 North Medical Drive
HHT Clinic/1A71 SOM
Salt Lake City, UT 84132
USA

Utah HHT Website

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

WashU HHT Website

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

WashU Area HOTELS

Media Publications

 

YALE UNIVERSITY SCHOOL OF MEDICINE *
Department of Diagnostic Radiology
P.O. Box 208042
789 Howard Avenue, Room CB225
New Haven, CT 06520
USA

Yale HHT Website

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

www.hhttoronto.com

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://www.brainavm.com

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

www.hey.nhs.uk/hht

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

www.hht-italia.com

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

www.renduoslerweber.nl

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