Interstitial Cystitis Painful Bladder Syndrome Global Support Groups


home page

IPBF: who are we ?
site map
interstitial cystitis & painful bladder syndrome (IC/PBS)
treatment of IC/PBS
other pelvic pain conditions
overactive bladder syndrome
incontinence
associated disorders
the urinary tract: how it works
news & reviews
literature: new scientific
literature: selected topics
IPBF newsletters
IPBF publications
information in other languages
glossary of terms: A-Z
information for professionals
books, videos, CDs
calendar
how to start and run a support group
surveys
global IC/PBS support groups, contact persons and related organizations
donations & sponsoring
useful links
disclaimer & copyright

Global PBS/IC support groups, contact persons and related organizations
- in alphabetical order

	click on the name to jump to the site (if available)

Argentina	ARACI Asociación Rosarina Afectados Cistitis Intersticial President: Liliana Bacchi Dorrego 3857-DTO.1 2000 Rosario, Argentina Tel: 0341-4644164 menadel_dan@hotmail.com
	Fundacion Geiser: Geiser Foundation Linkage, Research and Support Group for Rare Diseases Avellaneda 595, Ciudad de Mendoza, Argentina Tel: (54911) 15-5503-9901, Tuesday to Friday, 14.00 to 18.00 (Argentina time) fundgeiser@yahoo.com.ar
Australia	Interstitial Cystitis Support Group of Australia Contact: Katya Stooke PO Box 144, Richmond, VIC 3121 Australia katyabuc@hotmail.com
	Interstitial Cystitis Support Group Mercy Hospital for Women Clarendon Street, East Melbourne, 3002 Victoria Australia Contact: Christine Murray cjmurray@mercy.com.au
	Continence Foundation of Australia AMA House 293 Royal Parade Parkville Victoria 3052 Membership Officer: Meri Kimova Tel 61 3 9347 2522 Fax 61 3 9347 2533 info@continence.org.au
Austria	ICA Österreich e.V Chairman: Brigitte Annerl Irisweg 4 4623 Gunskirchen, Austria ica-austria@gmx.at
Belgium	Interstitiële Cystitis Patiëntenvereniging België (ICPB) Chairman: Josee De Raa P. Benoitstraat 49 1800 Vilvoorde Belgium Tel: 0473.21.76.40 (9-11 hrs) Fax: 03/844.49.83 info@icpb.be
Bolivia	La Paz IC Support Group Contact: Maria Eulalia Anker Tel: 591-2-271-2761 eulalia@ceibo.entelnet.bo
Brazil	Interstitial Cystitis Patient Support North East Brazil Contact person: Ariel Scafuri, MD Universidade Federal do Ceará Rua Republica do Libano, 88 apto 200 Fortalexa, Ceará Brazil 60160-140 tel: 55-32426652 and 99271133 urologia@gmail.com
	Fernando Almeida, MD. PhD Female Urology & Voiding Dysfunction Federal University of Sao Paulo UNIFESP-EPM Tel: 55-11-5576 4086 website: www.drfernandoalmeida.com.br University hospital website: www.uroepm.com.br
Canada	Association de la Cystite Interstitielle du Québec President: Françoise Robert 14 Grand Coteau Ste-Julie (Québec) J3E 2X4 Canada fax: 450-922-6498 frobert@videotron.ca
	IC/PBS Support Group Ottawa, Canada (English) Contacts: Inga Legere 613-839-6188 Anne Raina 613-733-5891
	Vancouver IC Group email: info.icvancouver@gmail.com
Czech Republic	Contact person: Libor Zamecnik, MD Urologicka Klinika VFN a 1. LF UK, Ke Karlovu 6 128 08 Praha 2 Czech Republic libor.zamecnik@lf1.cuni.cz
Denmark	IC Foreningen Chairman: Elly Jung Fredericiagade 9,1 1310 København, Denmark Tel: 75361824/44996636 graphicsdesign@gmail.com
Denmark	Steinunn Joergensen Project Nurse Department of Urology Herlev Hospital, University of Copenhagen DK-2730 Herlev, Denmark stjr@herlevhosp.kbhamt.dk
France	Association Française de la Cystite Interstitielle Chairman: Françoise Watel 82 rue Albert 75013 Paris France ci_france@hotmail.com
	Association Francaise d'Algies Perineales & Nevralgies Pudendales (AFAP-NP) President: Marie Boutet 60 rue Truffaut 75017 Paris, France email: contact@afap-np.com
Germany	IC-und-PBS Forum e.V.
	ICA Deutschland e.V Untere Burg 21 53881 Euskirchen Germany
Greece	Center for Urologic and Pelvic Pain Contact: Konstantinos Kalyvas, MD Chalkidis 51, Building A2 GR 555 35 Pilea, Thessaloniki Makedonia, Greece Tel-Fax 0030 2310-32 40 20 kalyvas@cppc.gr
India	Contact: Nagendra Mishra, MD Kidney and Urology Hospital, Interstitial Cystitis Centre 2nd floor, Shantam Complex, Gurukul Road, Memnagar Ahmedabad-380052, India Tel: 079- 27497083 Fax: 079-40054104 nagendraad1@yahoo.com
	Sjogren's India Kirtida Oza kirtidaoza@gmail.com
Italy	Associazione Italiana Cistite Interstiziale Viale Glorioso 13 00153 Rome Italy AICI@mclink.it
Japan	IC Tomonoki Chairman: Masako Katsurada 1459-56, Funaki-Cho Oumihachiman Shiga 523-0084 Japan tel/fax: 81-748.338222 info@tomonoki.org
	CUN (Comfortable Urology Network) info@hainyo-net.org
Kenya	IC Support Group East Africa Naukuru Chapter Chairman: James Gathuthi Mwangi P.O. Box 16521 Nakuru 20100 Kenya jgmwangi2003@yahoo.com
Mexico	ASOCIACION DE CISTITIS INTERSTICIAL MEXICO A.C.President: Florentina Ferreyra Lopez Cerezos 87 casa 41 Col. Jardines de Atizapan Atizapan de Zaragoza, Edo. De Mex. Mexico CP 52978 Tel: +52(55)54-04-89-16 flore@aci-mexico.com
Netherlands	Interstitiële Cystitis Patiententenvereniging (ICP) Postal address: Postbus 91 3980 CB Bunnik Visiting address: Smalleweg 6B 3981 EG Bunnik Tel: 030-6569632 (Tuesday and Thursday, 10.30-15.00 hours) Fax: 030-6569639 info@icpatienten.nl
	Nationale Vereniging Sjögrenpatiënten Postbus 4 3980 CA Bunnik Netherlands Tel. 030 - 2941383 Fax 030 - 2948503 info@nvsp.nl
New Zealand	New Zealand Painful Bladder Support Group NZICSG Chairman: Dot Milne P.O. Box 33-264 Christchurch New Zealand tel: 03-347-9007 weedot@xtra.co.nz
Norway	Norsk Forening for Pasienter med Urologiske Sykdommer (NOFUS) Chairman: Bernt Kvarstein MD kvarste@online.no
Peru	Contact person: Fernando Leon MD Lord Nelson 431, Miraflores Lima 18 Peru tel: 511-441-8386/511-421-6022 fax: 511-441-0276 home: 511-445-3150 ferleon@terra.com.pe
Poland	Contact person: Piotr Radziszewski MD Department of Urology Warsaw School of Medicine pradziszewski@poczta.onet.pl
	Polish IC/PBS patient website
Portugal	Associação de Doentes com Disfunção da Bexiga (ADDB) President: Lígia Almeida Apartado 3014 4716-909 Braga Portugal addbexiga@gmail.com
	Contact person: Paulo Dinis Oliveira MD Dept of Urology Hospital S. João 4200 Porto Portugal tel (hospital): 351225512100 cruzfjmr@med.up.pt
Romania	Contact person: Andrei Manu-Marin, MD website: http://www.cistita.ro andri_66@yahoo.com
Spain	Associación Balear de Afectados por la Trigonitis, Síndrome Uretral y la Cistitis Intersticial ABATYCI President: Maria del Rosario Fernandez Garcia Calle Sineu 2 (Adosado C) 07220 Pina, Mallorca tel: 971-66 53 22 abatycipina@hotmail.com
	Asociacion Catalana de Afectados de Cistitis Intersticial (ACACI) President: Monica Hernandez C/Pareto, 55 Atico 3a 08902 L'Hospitalet de Llobregat Barcelona, Spain asociacionacaci@hotmail.com
	Asociación Española Síndrome de Sjögren C/. Cea Bermúdez 14 A, piso 6 Of. 2 28003 - Madrid aessjogren@hotmail.com
Sweden	ISOP (PBS/IC, prostatitis) Lennart Branthle sm7gei@swipnet.se
Taiwan	Taiwan Interstitial Cystitis Association (TICA) icatw@mail.taic.doh.gov.tw
United Kingdom	Cystitis & Overactive Bladder Foundation Chair: Dawn Baty Kings Court 17 School Road Birmingham B28 8JG tel: +44-(0)121-7020820 info@cobfoundation.org
	Bladder & Bowel Foundation SATRA Innovation Park Rockingham Road Kettering, Northants, NN16 9JH Tel 01536 533255 Fax 0870 770 3249
	Pelvic Pain Support Network PO Box 6559 Poole Dorset BH12 9DP, United Kingdom info@pelvicpain.org.uk
	British Sjögren's Syndrome Association
United States	AARDA American Autoimmune Related Diseases Association
	American Chronic Pain Association
updated 9 January 2012	Interstitial Cystitis Association (ICA) Interstitial Cystitis Association 1760 Old Meadow Road, Suite 500 McLean, VA 22102 www.ichelp.org Phone: (703) 442-2070 Fax: (703) 506-3266 ATTN: ICA Email: ICAmail@ichelp.org
	National Association for Continence (NAFC) PO Box 1019 Charleston, SC 29402-1019, USA
	National Vulvodynia Association PO Box 4491 Silver Spring, MD 20914-4491 301-299-0775 (phone) 301-299-3999 (fax)
	NORD National Organization for Rare Disorders
	Prostatitis Foundation 1063 30th Street Box 8 Smithshire, Illinois 61478 fax 309-325-7184 voice mail 1-888-891-4200
	P.U.R.E. H.O.P.E. Support group association for chronic pelvic pain conditions Texas, USA President: Cindy Sinclair csinclair@pure-hope.org
	Simon Foundation for Continence
	Sjögren’s Syndrome Foundation
	International Sjogren's Network
	The National Pain Foundation 300 E Hampden Avenue, Suite 100 Englewood, CO 80113, USA

international	Continence Worldwide
	European Federation of Crohn’s and Ulcerative Colitis Association Chairman: Rod Mitchell rod.mitchell@infodor.fsnet.co.uk
	EURORDIS European Organization for Rare Diseases
	International Alliance of Patients' Organizations 49-51 East Road London N1 6AH United Kingdom Tel: +44 20 7250 8280 Fax: +44 20 7250 8285 info@patientsorganizations.org
	International Painful Bladder Foundation Burg. Le Fèvre de Montignylaan 73 3055 NA Rotterdam The Netherlands Tel/fax : +31-10-4613330 info@painful-bladder.org
	MICA info@multinationalica.org
	Orphanet database on rare diseases and orphan drugs

other PBS/IC websites	IC advice website Jessica Cangiano icadvice@icadvice.com