Australia
New South Wales
Ectopia Vesicae Association
based in Melbourne Victoria thru Royal Children's Hospital
Contact (03) 9345 5433 Ward 4 Main
(011613 9345 5433 for O.S.)
or Debi Petropoulos (03) 9689 6368
(011613 9689 6368 for O.S.)
Bladder Exstrophy Support Team
Anthony & Alana Weir
Sydney, New South Wales
(02) 9153 5127
(011612 9153 5127 for O.S.)
Austria
BEEB - Blasenekstrophie- und Epispadie-Betroffene
Please contact either:
Fam. Elke Oitzinger, Stambach 34, 4822 Bad Goisern/Austria
Tel: 06135/6185, E-mail: oitzi@aon.at
Fam. Gabi, Bachlbergweg 63, 4020 Linz/Austria
Tel: 0732/701289, E-mail: tremmel@netway.at
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Canada
Ontario
Hospital for Sick Children
Dept. of Social Work
555 University Avenue
Toronto, Ontario
M4J 1V7
416-813-6791
Contact: Barbara Neilson, M.S.W., Res.Dip., S.W., C.S.W, bneilson@sickkids.on.ca
Barbara Neilson also operates a 'world-wide' internet support group that uses your own personal e-mail and is available to all those interested in discussing bladder exstrophy (classic,cloacal) and its related conditions(ie epispadias). To subscribe, send an email to majordomo@sickkids.on.ca , leave the subject area blank, and in the body type the following two words: subscribe exstrophy . After receiving confirmation that you are a member of the listserve support group, post all messages to the support group by emailing exstrophy@sickkids.on.ca
Quebec
Association for Parents and Persons with Exstrophy Vessicale and/or Epispadias (APPEVE)
14 Mansart
Sant-Luc, Quebec
J2W 1W6
450-349-3104
Pierre Cloutier and Sonia Poulin
L'Association des Enfants avec Exstrophie
Vesicale et/ou Epispadias (AEEVE)
Association for Children with Bladder exstrophy and/or epispadias (ACBEE).AEEVE/ACBEE
380, Marie Curie
Ste-Julie (Quebec)
Canada
J3E 1A4
Phone number: 450-922-1361
Cell: 514-258-8120
Web site: www.wintecplus.com/aeeve
Contact: Nathalie Pichet, President(514-840-3000 ext.5264)
E-mail: Aeeve@globetrotter.net
This group is affiliated with Montreal Children's Hospital and has been in operation since 1998.
Western Canada
Western Canada Bladder Exstrophy Support Group
This group has a once-a-year camping outing. Please contact
Kathy Lee at donklee@telus.ne
for info on the yearly camping outing.
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Germany
SHG BLASENEKSTROPHIE
Leiterin: Julia Beckers
Straucher Weg 11
82293 Mittelstetten
Germany
Heiko Reutter MD
PICU / Children's Hospital
Medical Center of the University of Bonn
Adenauerallee 119
D-53113 Bonn / Germany
Email: hreutter@gmx.net
Private Phone: +49 0228 249 6792
Ireland
Irish Bladder Exstrophy-Epispadias
Support (Irish BEES)
26 Fairy House Lodge
Ratoah, Co. Meath
Ireland
Contact: Linda & Alan Neild-Crabb, neilda@indigo.ie
Italy
ASSOCIATION FRIENDS DI GABRIEL
Onlus Via Redecesio 12 20090 SEGRATE (ME) ITALY
Tel.: 340.9274924
email: info@amicidigabriele.org
http://www.amicidigabriele.org
President: Mauro Gocilli (presidente@amicidigabriele.org)
Netherlands
Nederlandse oudervereniging
voor blaasextrofiepatienten
c/o Ben Cornelissen
Brahmsstraat 45
6661 BC Elst, Gelderland
Tel: 0481 376788
E-mail: ben.cornelissen@edu.han.nl
Nigeria
Bladder Exstrophy and Epispadias Support Group(NIGERIA )
Tel. + 234 803 334 7978
+ 234 803 777 0496
E-mail: htadelaye@yahoo.com
Contact Person: Henry Adelaye
Norway
Norwegian
Association for Bladder Exstrophy and Epispadias:
Contact person: Jan Erik Ruud, Rasmus Engers vei 3, 0956 Oslo.
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Spain
Asociaci˘n Espa¤ola de Extrofia Vesical (ASEXVE)
Support group for bladder and cloacal exstrophy children and parents.
Web-site: http://www.extrofia.com/asexve/
Email: Jose Cortes - President at asexve@extrofia.com
Switzerland
EXTRO
Aeschbach Markus
Haselgasse 101
CH-3902 Glis (VS)
Contact person: President : Dominique Andermatt,
d.andermatt@exstrophie.ch
Website: www.exstrophie.ch
United Kingdom
UK Bladder Exstrophy-Epispadias
Support
c/o Karen Brummell
8 Burnbray Avenue
Burnage, Manchester, M19 1DA,
United Kingdom.
Karen Brummell, Secretary,Karen@bees-group.co.uk
Website: www.bees-group.co.uk
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United States
California
California B.E.S.T. (Bladder Exstrophy Support Team)
1043 Cowper Street
Palo Alto, CA 94301-3215
Contact: Douglas Kreitz
E-mail:
californiabest@earthlink.net
Website:
http://www.stanford.edu/~kreitz/CaliforniaBEST.htm
Sponsor: Department of Urology, Stanford University
Connecticut
Tri-State Bladder Exstrophy Support Group
(NewYork/New Jersey/Connecticut)
20 Terra Glen Road
Danbury, Connecticut 06811
203-792-3495
Andrea & Steve Caris
Indiana
Riley Children's Hospital
Dept. of Urology
702 Barnhill Drive
Room 1739
Indianapolis, IN 46202
317-274-7688
Contact: Shelly King, R.N.
Massachusetts
"We're Here" Support Group
Children's Hospital Boston
Dept. of Urology
300 Longwood Avenue
Boston, Massachusetts 02115
617-355-7796
Contact: Rosemary Grant, R.N.
Web-site: http://www.childrenshospital.org/urology
Michigan
Children's Hospital of Michigan Exstrophy Support Group
Pediatric Urology Department
3901 Beaubien Boulevard
Detroit, Michigan 48201
313-745-5588
Minnesota
Children's Health Care - Minneapolis
2525 Chicago Avenue South
Minneapolis, Minnesota 55404
1-800-278-6262
Contact: Anne Biosclair-Fahey, C.U.R.N.
Maryland
The Johns Hopkins Hospital, Exstrophy Support Group
Marburg 1, 600 North Wolfe Street
Baltimore, Maryland 21287-2103
410-955-5358
Contact: Bettye Lewandowski
New Jersey
See Tri-State Bladder Exstrophy Support Group listed under CONNECTICUT
New Mexico
This group is in the process of forming. Please contact the ABC if you are interested in more information (919-624-9447 or email
admin@bladderexstrophy.com)
New York
Westchester Medical Center
Valhalla, NY
Contact: Dr. Edward Redi
See also Tri-State bladder Exstrophy Support Group listed under CONNECTICUT
White Plains Bladder Exstrophy Support Group
311 North Street, Suite 310
White Plains, NY 10605
914-948-8765
Contact: Penny Colbert-Kogan, R.N.
Oklahoma
Please contact Lori Buechler, RN @ 918-605-8966.
E mail: lori-buechler@ouhsc.edu
Ohio
Central Ohio Bladder and Cloacal Exstrophy Support Group
c/o Urodynamics,
Children's Hospital
700 Children's Drive
Columbus, OH 43205
614-722-5801
Contact: JoBeth Burns, RN
Additional Info: Newsletter
Pennsylvania
Delaware Valley Exstrophy Support Group
Children's Hospital of Philadelphia
Urology Department
Wood Building, 3rd Floor
34th Street & Civic Center Blvd.
Philadelphia, PA 19104-4399
215-590-2754
St
Louis/Midwest Chapter
Contact: Janet Vogt
149 Knippenberg Rd
St Louis, MO 63129
janetmc@bjc.org
(314) 454-6197
Washington
NW Exstrophy Support Group
c/o Children's Hospital and Medical Center
Urology Clinic
P.O. Box 5371,
4800 Sandpoint Way N E
Seattle, WA 98105
206-526-2509
Contact: Ginger Thomas, RN, gthoma@chmc.org
Sherrie Croshaw, parent coordinator alec3j@aol.com
Web-site:http://www.chmc.org/surgery/exstrophy/exsuppgrp.asp
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Internet Support Groups
Association for the Bladder Exstrophy Community (ABC)
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