* Quick Links: U.S. Treatment Center, International Treatment Centers, International Patient Support Groups

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.

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 eight U.S. Center locations 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 on the following link for more information. www.patientadvocate.org/resources.php

HHT TREATMENT CENTERS OF EXCELLENCE

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North America

1. YALE UNIVERSITY SCHOOL OF MEDICINE
Department of Diagnostic Radiology
P.O. Box 208042
333 Cedar St., Room 5039 LMP
New Haven, CT 06520
USA

Contact: Kate Henderson & Dr. Robert White
Tel: 203-737-5395
Fax: 203-737-5394
http://www.hhtavm.org

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

Jamie McDonald, MS, LGC and James Carlisle, MD – Co-Directors
Main contact # : 801-581-8188 or tollfree 866-292- 4HHT (Sherlyn Marks- Administrative Coordinator)
Jamie McDonald – 801-585-9702
Dr. Carlisle- 801-581-8188
Fax: 801-581-2414
http://uuhsc.utah.edu/rad/hht.html

3. OREGON HEALTH & SCIENCE UNIVERSITY
HHT Center of Excellence
OHSU L-605
3181 S.W. Sam Jackson Park Rd.
Portland, OR 97239-3011
USA

Contact: Dr. Mark Chesnutt
Tel: 888-222-6478 ext 7660 or 503-494-7660
http://www.ohsu.edu/hht

4. WASHINGTON UNIVERSITY SCHOOL OF MEDICINE
660 South Euclid Avenue
St. Louis, MO 63110-1093
USA

Contact: Dr. Murali Chakinala, Co-Director
Tel: 877-888-5864 or 314-454-8917
Dr. Andy White, Co-Director
Tel: 1-888-503-2237

Dr. Jay Piccirillo, Ear, Nose & Throat (ENT)
Tel: 314-362-8641
http://hht.im.wustl.edu

5. UNIVERSITY OF CALIFORNIA at SAN DIEGO
UCSD Medical Center
200 West Arbor Drive 8756
San Diego, CA 92103
USA

Contact: Julie Fisher & Dr. Frank Miller
Tel: 888-770-0296/619-471-0320

Contact: Dr. Thomas Kinney
Tel: 619-543-6607 (secretary: Angelica Robles)
www.uscd.edu/specialties/radiology/ir/HHT
www.ucsdir.org

6. UNIVERSITY OF PENNSYLVANIA
Division of Medical Genetic, 538 Maloney
3400 Spruce Street
Philadelphia, PA 19104-4283
USA

Contact: Dr. Reed Pyeritz
Tel: 215-662-4740
www.med.upenn.edu/gdl//

7. 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
Tel: 507-266-0416
Fax: 507-266-4372
www.mayo.edu

8. MEDICAL COLLEGE OF GEORGIA HHT CENTER
Division of Pulmonary Medicine
1120 15th St. BBR 5513
Augusta, GA 30912-3135
USA
http://www.mcg.edu/som/medicine/Pulmonary/PulmVasDis.htm

Contact: Jody Kenny for Dr. James Gossage
Tel: 706-721-6791
Fax: 706-721-3069
Email: jkenny@mail.mcg.edu

9. TORONTO HHT NETWORK
St. Michael s Hospital
6 Bond St., Room 6049
Toronto, ON M5B 1W8
CANADA
www.hhttoronto.com

Pediatric HHT Clinic
Director: Dr. Felix Ratjen
Hospital for Sick Children
Tel: 416-813-5837 (contact: Susan Carpenter)
http://www.sickkids.ca/RespiratoryMedicine?section.asp?s=Clinical+Care&sID=3876&ss=HHT=Clinic&ssID=6188

Adult HHT & Pulmonary AVM Center
Contact: Rose Pantalone for Dr. Marie Faughnan, Director
Tel: 416-864-6060 ext. 2407

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,CCGC,CGC
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

10. EDMONTON HHT CENTRE
2E4.26 Walter Mackenzie Centre University of Alberta
8440 112 Street
Edmonton, AB T6G 2B7
CANADA

Contact: Iris de Guzman for Dr. Vethanayagam
Tel: 780-407-1479
Email: irisd@ualberta.ca

11. MONTREAL HHT CENTRE
CHUM, Hotel Dieu
840 rue St. Urbain
Montreal, QC H2W 1T8
Director: Dr. Marie Faughnan
Contact: Therese Carle
Tel: 514-890-8000 local 15672
Fax: 514-412-7123

International

11. HHT LONDON
Hammersmith Hospital
DuCane Road
London, ENGLAND W12 ONN
Contact: Claire Shovlin
Tel: 44-208-383-3269

You can also contact the Telangiectasia Self-Help Group (TSHG) at www.telangiectasia.co.uk
Contact: Diana Lawson
39 Sunny Croft Downley
High Wycombe, Bucks ENGLAND HP13 5UQ

12. HHT HULL NORTHEAST ENGLAND
Hull Royal Infirmary
Anlaby Rd
Hull, ENGLAND HU3 2JZ

Contact: Mrs. Hilary Finnis and Dr. Graham Robinson
Tel: 44(0) 1482-674608
hht@hey.nhs.uk
www.hey.nhs.uk/hht
You can also contact the Telangiectasia Self-Help Group (TSHG) at www.telangiectasia.co.uk

13. NATIONAL HHT CENTRE IRELAND
Mercy University Hospital
Grenville Place
Cork, IRELAND

Contact: Margaret Murphy & Dr. Adrian Brady
Tel: 353-21-2305040
Email: Margaret@hht.ie
Patient Support Group:
Grace Nolan Foundation at www.Gracenolan.com

14. HHT THE NETHERLANDS
St. Antonius Ziekenhuis
Koekoekslaan 1
3435 CM Nieuwegein, THE NETHERLANDS

Contact: Dr. Hans Jurgen Mager
Appointments: Mrs. Elly Vermorken
31-30-609-9111
www.renduoslerweber.nl

15. HHT GERMANY HOMBURG
Univ. HNO-Klinik
Kirrberger Strasse
D-66421 Homburg
Saar, 49 GERMANY

Contact: Dr. Urban W. Geisthoff
Tel: 49-0-6841-162-2900
Fax: 49-0-6841-162-2997
Email: hnougei@uniklinik-saarland.de
Or
Urban.Geisthoff@uniklinik-saarland.de
You can also contact Morbus-Osler-Selbsthilfe e. V. (the HHT Self-Help Group for German speaking countries) at http://www.morbus-osler.de

16. HHT 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
Email: zapf@med.uni-marburg.de

17. HHT GERMANY-LIPPRINGE
Department of Otolaryngology
Head and Neck Surgery
Karl-Hansen Medical Center
Antoniusstr. 19
Contact: Dr. Benedikt J. Folz
Tel: 49-5252-954302
Fax: 49-5252-954350
Email: b.j.Folzmedizinisches-zentrum.de

18. HHT 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

19. HHT NORTHERN ITALY
U.O di Gastroenterologia ed Endoscopia Digestiva
Ospedale Maggiori
Via Maccale 1
Crema, 26103 ITALY

HHT Clinical Team
Dr. Elisabetta Buscarini
Tel: 0039-0373-280422/280726 (secretary)
Fax: 0039-0373-280654
ebuscarini@rim.it

HHT Genetics Team
Contact: Professor Cesare Danesino
Tel: 0039-0382-507737
Fax: 0039-0382-525030
cidi@unipv.it

Patient Support Group:
Fondazione Italiana HHT, email: informazioni@hht.it. or http://www.hht.it

20. HHT SOUTHERN ITALY
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
informazioni@hht.it
www.hht-italia.com

21. 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
Email: rzarrabeitia@hsll.scsalud.es

Dr. Perez del Molino
Email: apdm@ono.com
Tel: 34-942-847400 (8053)
Fax: 34-942-847501

Spanish HHT Patients Association web page is: www.asociacionhht.org or renduosler@asociacion-hht.org

22. HHT CENTER SOUTHERN FRANCE

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
Email: Henri.plauchu@chu-lyon.fr

23. HHT CENTER PARIS FRANCE
Consultation Pluridisciplinaire Maladie de Rendu-Osler
Hopital Ambrose Pare
9, Avenue Charles de Gaulle
92104 Boulogne Billancourt Cedex FRANCE

Contact: Benedicte Chesneau
Tel: 33-014094432
Email:
Benedicte.chesneau@apr.aphp.fr

24. 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
81-18-884-6110 or 81-18-884-6531

25. HHT CENTER NORWAY

Rikshospitalet University Hospital
Oslo, Norway
Contact: Dr. Ketil Heimdal, Consultant in Clinical Genetics
Tel: 47-2307-5593
Fax: 47-2307-5590
Email: Ketil.Heimdal@rikshospitalet.no

26. 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
Email: zhonghongshan@hotmail.com or xuke@cmuimaging.com

27. 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
Dr. Meir Mei-Zahav, Director
Tel: (972)-3-9253654
Fax: (972)-3-9253308
email: meir_zahav@clalit.org.il

International Patient Support Groups

1. ISRAEL
The HHT Patient Association in Memory of B. Getz
Coordinator: Meira Heiman
Tel: (972) 050-6-417 187
Email: hht-issg@yahoo.com, heimann@netvision.net.il

2. ENGLAND
Telangiectasia Self-Help Group at www.telangiectasia.co.uk

3. IRELAND
Grace Nolan Foundation at www.Gracenolan.com

4. GERMANY
Morbus-Osler-Selbsthilfe at http://www.morbus-osler.de

5. ITALY
Fondazione Italiana HHT, email: informazioni@hht.it.
http://www.hht.it

6. SPAIN & PORTUGAL Patient Support Group
http://www.asociacionhht.orgor renduosler@asociacion-hht.org

7. FRANCE
http://www.amro-france.org
Dominique Cortadellas, Patient Education LiaisonEmail: amrofrance@aliceadsl.fr