Stichting Onderzoek Rendu Osler (SWORO)
St. Antonius Ziekenhuis
Afdeling Longziekten
Koekoekslaan 1
3435 CM Nieuwegein
T 088 - 320 14 25
E c.westermann@antoniusziekenhuis.nl
Bankrekening : Mees Pierson Amsterdam #24.89.78.543
SWORO heeft als doel middelen te coördineren en ter beschikking te stellen ten behoeve van ROW-onderzoek.
De Hart&Vaatgroep
Postbus 133
3769 ZJ Soesterberg
T 088 - 111 16 00
E info@hartenvaatgroep.nl
W www.hartenvaatgroep.nl
Hier kunt u gratis één of meerder exemplaren opvragen van de patiëntenbrochures over de ziekte van Rendu Osler Weber, alsmede over een AVM of aneurysma in het hoofd en maagdarmischemie
St Antonius Ziekenhuis
Koekoekslaan 1
3435 CM Nieuwegein
Elly Vermorken (afspraken screening nieuwe patienten)
T 088 - 320 14 25 of 088 - 320 30 00 (telefooncentrale vragen via sein 384)
E e.vermorken@antoniusziekenhuis.nl
Polikliniek longziekten: T 088 - 320 14 00
Secretariaat longziekten: T 088 - 320 14 25
Martini Ziekenhuis
Van Swietenlaan 4
9728 NZ Groningen
Polikliniek Longziekten: T 050 - 524 59 30
Breed Platform Verzekerden en Werk
Helpdesk Gezondheid, Werk en Verzekeringen
T 020 - 480 03 00 (ma t/m vrij 12-20 uur)
Website: www.bpv.nl
UMC Utrecht
afdeling Medische Genetica
Lundlaan 6
3584 EA Utrecht
T 088 - 755 38 00 of 088 — 755 55 55
E erfadv@umcutrecht.nl
Website : www.umcutrecht.nl./erfelijkheid
HHT Foundation International
P.O. Box 329
Monkton, Maryland 21111 USA
T 410-357-9932
F 410-357-9931
E hhtinfo@hht.org
Website: www.hht.org
Canada
Website: Toronto HHT Center
St. Michael’s Hospital
30 Bond Street
Office 2 Bond, Room 027
Toronto, Ontario
Canada M5B 1W8
Adult HHT and Pulmonary AVM Center
Coördinator: Dr. Marie Faughnan 416-864-5412
HHT Genetics Team
Coördinator: Regan Klatt, Genetics Counselor
416-813-6389
Pediatric HHT Clinic
Hospital for Sick Children
Director: Dr. Ian MacLusky (pediatric respirologist)
416-813-6248
Edmonton HHT Centre
2E4.26 Walter Mackenzie Centre University of Alberta
8440 112 Street Edmonton, AB T6G 2B7-Canada
Contact: Iris de Guzman;
T 780-407-1479
E irisd@ualberta.ca
Montreal HHT Centre
CHUM, Hotel Dieu
840 Rie St. Urbain
Montreal, QC H2W 1T8
Contact : Therese Carle ; tel :514-890-8000 local 15672
China
The first Affiliated Hospital of China Medical University
Dept. of Radiology
155 Nanjing Bei str. Shenyang, China 110001
Contact: Dr. Hongshan Zhong
T 86-24-832-82447
E zhonghongshan@hotmail.com
Denemarken
Odense University Hospital
Odense
T 045 -63-20-2120
Svendborg, Denmark
Contact: 045-6320-2120 or 045-6320-2127
Duitsland
HHT Germany – Cologne
Kliniken der Stadt Koeln
HNO-abteilung
Neufelder strasse 32-D-51067 Koeln
Contact: Dr. Urban Geisthoff;
T 49-221-8907-12727
E Geisthoffu@kliniken-koeln.de
HHT Germany-Lippringe
Karl Hansen Medical Centre, dept. of Otolaryngology
Antonius str. 19 D-33175 Bad Lippspringe
Philipps-University Marburg
Dep. of Otorhinolaryngology
Deutschhausstrasse 3
D-35037 Marburg
T 49-6421-2866808.
E zapf@med.uni-marburg.de
Homburg
Univ.-HNO-Klinik
D-66421 Homburg
Saar, 49
Contactpersoon: Dr. med. Urban W. Geisthoff
T 49-(0)-6841-162-2900 (phone central)
F 49-(0)-6841-162-2997 (secretary)
E hnougei@uniklinik-saarland.de or Urban.Geisthoff@uniklinik-saarland.de
website: TSHG(Telangiectasia Self Help Group for German-speaking countries)
website: HHT Germany
Frankrijk
Lyon
Service De Genetique, Hotel Dieu
Quai Jules Courmont
69288 Lyon Cedex 02
Contactpersoon: Henri Plauchu, M.D.
T 4-72-413295
Parijs
Consultation pluridisciplinaire Maladie de Rendu-Osler
HOPITAL AMBROISE PARÉ
9, avenue Charles de Gaulle
92104 BOULOGNE BILLANCOURT CEDEX
T +33 01 49 09 44 32, +33 0149094432
E benedicte.chesneau@apr.aphp.fr
Ierland
Cork
National HHT Centre
Mercy University Hospital
Grenville Place, Cork
website: HHT Ireland
Coördinator: Margaret Murphy
T 353 21 2305040
E margaret@hht.ie
Website: The Grace Nolan Foundation Irish family support web site
Italie
Bari
Dipartimento Di Medicina Interna E Medicina Pubblica (Dimimp)
Universita Policlinico
Piazza G. Cesare 70124 Bari, Italy
Contact: Prof. Carlo Sabba M.D.
T/F 39 080-5478708 39 080-5478708
E C.sabba@dimimp.uniba.it
Crema
Gastroenterologia ed Endoscopia Digestiva
Ospedale Maggiore
Via Macallè 1
26013 Crema, ItaliTALY
Pavia
Genetica Medica
Università di Pavia
Via Forlanini 14
27100 PAVIA , ITALY
Coördinator: Dr. Elisabetta Buscarini
T 00 39 03 73 28 04 22, 00 39 03 73 28 04 22 / 28 07 26 (secretary)
F 00 39 03 73 28 06 54
E ebuscarini@rim.it
website: Fondazione Italiana HHT (Italian HHT Patient Group)
Israel
Schneider Children’s Medical Centre of Israel
Rabin Medical Centre, Tel Aviv University
14 Kaplan str. , Petach Tikwa
Dr. Meir Mei-Zahar
T (972)-3-9253654
E meir_zahav@clalit.org.il
Japan
Akita
Akita University School of Health Services
Department of Physical Therapy
1-1-1 Hondo, Akita, 010-8543 Japan
Contact: Takanobu Shioiya, M.D., Ph.D.
T 81-18-884-6110 & 81-18-884-6531
HHT Centre Noorwegen
Rikshospitalet University Hospital
Oslo, Norway
Contact: Dr. KetilHeimdal; Tel.: 47-2307-55903
Spanje
Torrelavega
Hospital Sierrallana (Servicio Cántabro de Salud)
Servicio de Medicina Interna
Barrio Ganzo s/n
39300 Torrelavega (Cantabria) Spain
T 942 847400
Contacts: Dr. Zarrabeitia (rzarrabeitia@hsll.scsalud.es)
Dr. Pérez del Molino (ssetienb@meditex.es)
Website: Support group for HHT patients of Spain and Portugal.
E renduosler@asociacion-hht.org
Verenigd Koninkrijk
Londen
Hammersmith Hospital
Londen, Engeland
Contact: 44.208.383.3269
Website: TSHG(Telangiectasia Self Help Group in Britain)
Hull
HHT Treatment Clinic
Contactpersoon: Hillary Finnis
T +44 (0) 1482 674608
E hht@hey.nhs.uk
Verenigde Staten
Yale University Medical School
Dept. of Diagnostic radiology
333 Cedar str. Room 5039 LMP
New Haven, CT 06520-USA
Contact: Kate Henderson; tel.: 203-737-5395
University of Utah Medical Centre
50 North Medical drive
HHT clinic/1A71 SOM
Salt lake City, UT 84132
Contact: Jamie McDonald; tel.: 801-585-9702
Oregon Health&Science University
HHT centre
OHSU L-605
3181 S.W. Sam Jackson Park Road
Portland, OR 97239-3011-USA
Contact: Dr. Mark Chesnutt; tel.:888-222-6478, ext.7660
Washington University School of Medicine
660 South Euclid Avenue
St. Louis, MO 63110-1093-USA
Contact: Dr. M. Chakinala: tel.: 877-888-5864
Augusta
Medical College of Georgia
Division of Pulmonary Medicine
1200 15 Street
BBR5513
Augusta, GA 30912-3135 USA
Contactpersoon: Jody Kenny
T 706-721-6791
F 706-721-3069
E jkenny@mail.mcg.edu
center director: Dr. James Gossage
Philadelphia
University of Pennsylvania Health System
Department of Medicine
Division of Medical Genetics
Room 538 Maloney Bldg.
3400 Spruce Street
Philadelphia, PA 19104-4283
Contactpersoon: Barbara Bernhardt/Dr. Reed Pyeritz
215-662-4740
Portland
Oregon Health and Science University
Mailcode UHN67
3181 S.W. Sam Jackson Park Road
Portland, OR 97239
Toll Free: 888-222-6478 ext 7644
Direct: 503-494-7644
F 503-494-6465
Rochester
Mayo Clinic
Division of Pulmonary & Critical Care Medicine
200 First Street SW
Rochester, MN 55905 USA
Contactpersoon: Dr. Karen L. Swanson & Dr. Michael J. Krowka
T 507-266-0416
F 507-266-4372
San Diego
University of California Medical Center
200 West Arbor Dr.
San Diego, CA 92103
Contactpersoon: Julie Fisher/Dr. Frank Miller
T 888-770-0296
T 619-543-7965
Contactpersoon: Eric Rosenthal, Phd, ScM
Genetics Counselor
858-822-2124
Website: University of California Medical Center Faculty
Website: www.medicine.ucsd.edu/Radiology
Website: www.ucsd.vasculardomain.com
St. Louis
Washington University School of Medicine
660 South Euclid Avenue
St. Louis, MO 63110-1093
Contactpersoon: Chris Fuhler/Dr. Daniel Goodenburger
(314) 362-8065 Dr. Andy White (Pediatrician)