Worldwide directory of IC and PBS organizations
World in the palm of your hands, photograph by Miguel Ugalde
IC doesn’t play favourites; it affects people from all walks of life around the globe. While more research is carried out in Europe and North America, and more support and organizations exist in these areas, IC is nevertheless (thankfully), slowly becoming more internationalised. Proof of this fact is that more and more ICers from all over the world are making their voices heard, and putting their efforts towards IC!
The following is a list of known Interstitial Cystitis organizations; all attempts have been made to ensure that the information provided is accurate and up to date.
IC Worldwide Organizations Directory
Australia
Interstitial Cystitis Support Group of Australia
Chairman: Alice Terry
P.O. Box 767, Kingswood
2747 New South Wales
Australia
Email: alicetlib@hotmail.com
Web: www.users.bigpond.net.au/ICSG
Interstitial Cystitis Support Group
Contact: Christine Murray
Mercy Hospital for Women
Melbourne, Victoria
Australia
Email: CMurray@mercy.com.au
Austria
ICA Österreich e.V.
Chairman: Elke Hufnagl
Irisweg 4
4623 Gunskirchen
Austria
Tel/fax: 43-7246/ 8448
Email: ica-austria@gmx.at
Web: www.icnaustralia.com
Bolivia
La Paz IC Support Group
Maria Eulalia Anker
Tel: 591-2-271-2761
Email: eulalia@ceibo.entelnet.bo
Brazil
Interstitial Cystitis Patient Support North East Brazil
c/o Ariel Scafuri, MD
Universidade Federal do Ceará
Rua Republica do Libano, 88 apto 200
Fortalexa, Ceará, Brazil 60160-140
Tel: 55-8524239-99970367
Email: ascafuri@uol.com.br
Canada
Association de la Cystite Interstitielle du Québec
President : Françoise Robert
14 Grand Coteau
Ste-Julie, Quebec
Canada JOL 2SO
Fax: 450-922-6498
Email: frobert@videotron.ca
Web: http://www.cystite-interstitielle.org
The Canada IC Resource Centre (a branch of the IC-Network)
Sandy McNicol
#109-4949 Wills Road
Nanaimo, British Columbia
Canada V9T 2K4
Tel: (001) 250-758-3207
Fax: (001) 250-758-4894
Email: smcnicol@pacificcoast.net
Web: http://www.canadaic.com
Czech Republic
Dr Libor Zamecnik
Urologicka klinika
VFN a 1. LF UK
Ke Karlovu 6 128 08 Praha 2
Email: libor.zamecnik@lf1.cuni.cz
Denmark
IC Foreningen
Chairman: Annette Rasmussen
Magleparken 142, st.v
2750 Ballerup
Tel: +45 44 97 04 38
Email: chanti@worldonline.dk
Steinumm Joergsen
Project Nurse
Department of Urology
Herlev Hospital
University of Copenhagen
DK-2730 Herlev
Denmark
Email:stjr@herlevhosp.kbhamt.dk
France
Association Française de la Cystite Interstitielle
Chairman: Françoise Watel
82 rue Albert
75013 Paris
France
Email: ci_france@hotmail.com
Web: http://www.orpha.net/associations/AFCI/
Germany
ICA Deutschland e.V.
President: Barbara Muendner-Hensen
Untere Burg 21
53881 Euskirchen
Germany
Tel: 49-2251-76729 or 74780
Fax: 49-2251-74788 or 76729
Email: muendner-hensen@t-online.de
Email: juergen.hensen@t-online.de
Web: http://www.ica-ev.de
India
Dr. Nagendra Mishra
2nd Floor, Karnavati Hospital Building
Opp. Town Hall
Ellisbridge, Ahmedabad-380 006
India
Email: nagendraad1@sancharnet.in
Interstitial Cystitis Patient Network - India
Chairman: Indu Mishra
Tel: 0265-553-2656.
Email: moonlotus2001@yahoo.com
Italy
Associazione Italiana Cistite Interstiziale AICI
President: Loredana Nasta
Viale Glorioso 13
00153 Rome
Italy
Tel: 39-6-58333384
Fax: 39-6-58333127
Email: AICI@mclink.it
Web: http://www.aici-onlus.com
Japan
IC Tomo no Ki
Chairperson Masako Katsurada
1459-56, Funaki-cho Oumihachiman
Shiga 523-0084, Japan
Tel: +81.748.338222
Fax: +81.748.338222
Email: perro@mx.biwa.ne.jp
Web: http://www.biwa.ne.jp/~perro
Kenya
East Africa IC Support Group Nakuru Chapter
Chairman: James G. Mwangi
Tel: 245720391104
Email: jgmwangi2003@yahoo.com
Mexico
Asociación de Cistitis Intersticial México
Founder: Florentina Ferreyra Lopez
Email: flore@aci-mexico.com
Tel: +52(55)53-74-36-91
PR: Mayra Zamora Toscano
Email: may@aci-mexico.com
Tel: +52(55)53-74-36-91
Amatlán No. 37-2,Col. Condesa, CP 06140
México, D.F.
Web: http://www.aci-mexico.com
Netherlands
Interstitiële Cystitis Patiëntenvereniging (ICP)
Chairmen: Joke Scholten
Email: JMAScholten@hetnet.nl
Lynne van Poelgeest M.L.
Email: van.Poelgeest@12move.nl
Hon.President: Jane Meijlink
Email: jane-m@dds.nl
Secretariat, Cypergrasweg 30,
1313 AL Almere,
The Netherlands
Email: JMAScholten@hetnet.nl
Web: http://www.icpatienten.nl/
New Zealand
Interstitial Cystitis/Urology Support Group
Dot Milne, Group Leader
PO Box 33-264, Christchurch
New Zealand
Phone: + (03) 347-9007
Email: weedot@xtra.co.nz
Norway
Norge ICPA
Julia M. Godøy
Langedalskleiva #4
Lillesand 4790
Norge
Tel: +47 37 27 41 77
Email: jegodoy@online.no
Web: http://www.americanbladder.org/norway/
Norsk Forening for Pasienter med Urologiske Sykdommer (NOFUS)
Chairman: Bernt Kvarstein MD
Tel: 55 95 35 88 - 55 33 09 30
Fax: 55 33 09 31
Web: http://www.nofus.no
Peru
Fernando Leon MD
Urologist
431 Lord Nelson
Miraflores, Lima 18
Peru
Email: ferleon@terra.com.pe
Poland
IC-Polska
Agnieszka Blazewicz
Email: IC-Polska@yahoogroups.com
Web: http://groups.yahoo.com/group/IC-polska
Portugal
Paulo Dinis Oliveira MD
Department of Urology
Hospital S. Joao
4200 Porto
Portugal
Hospital phone: +35 1225512100
Email: cruzfjmr@med.up.pt
Spain
A.M.A.T.Y.C.I.
Maria del Rosario Fernandez Garcia
Calle Sineu
2 Adosado C
07220 Pina ( Algaida )
Mallorca, Spain
Tel: 971.66.53.22
EMail: abatycipina@hotmail.com
Email: abatycipina@hotmail.com
Web: http://usuarios.tripod.es/abatyci
Sweeden
ISOP
Lennart Branthle
Email: sm7gei@swipnet.se
Web: http://home.swipnet.se/isop/ic.htm
United Kingdom
The Cystitis and Overactive Bladder Foundation (COB)
76 High Street,
Stony Stratford,
Buckinghamshire
United Kingdom
MK11 1AH
Tel: +44 (0) 1908 569169
Fax: +44 (0) 1908 565665
Email: info@cobfoundation.org
Web: http://www.cobfoundation.org/
Bladder Pain Syndrome Association (BPSA)
Chairperson: Lesley Morrison
1 Moss Close,
Vange, Basildon, Essex
United Kingdom
SS16 4SD
Tel/fax: 01268 555523
Email: info@b-p-s-a.org.uk
Web: http://www.b-p-s-a.org.uk/
United States of America
American Bladder & Pelvic Pain Assn., Inc. (National)
President: Jill Osborne
621 Smith Drive.
Metairie, LA, USA 70005
Email: info@americanbladder.org
Web:
Greater Houston Interstitial Cystitis United ICU (Regional)
President: Cindy Sinclair
Tel: 1-409-948-3710
Email: icu-cindy@sbcglobal.net
Interstitial Cystitis Association ICA
President: Vicki Ratner
110 North Washington Street, Suite 340
Rockville, MD 20850, USA
Tel: 1-301-610.5300
Fax: 1-301-610.5308
Email: ICAmail@ichelp.org
Web: http://www.ichelp.org
The IC Network
Founder: Jill Osborne
4983 Sonoma Highway, Suite L
Santa Rosa, California
USA 95409
Tel: (707)538-9442
Fax: (707)538-9444
Email: jill@ic-network.com
Website: http://www.ic-network.com
International Organizations
The (new) International Interstitial Cystitis Patient Network
Web: http://www.interstitial-cystitis.org
International Painful Bladder Foundationn
Chairman: Jane Meijlink
Burgemeester Le Fevre de Montignylaan 73
3055 NA Rotterdam
The Netherlands
Tel/fax: +31-10-4613330
Email: info@painful-bladder.org
Web: http://www.painful-bladder.org.
And (of course) this website, which is not technically an organization, however it is open to everyone in the world so it is worthy of inclusion:
ICadvice (Interstitial Cystitis Advice)
Founder: Jessica Cangiano
Email: Jessica Cangiano
Web: http://www.icadvice.com