Interstitial Cystitis - Support Groups

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Support Groups

Interstitial cystitis does not have a cure and for that reason the individuals suffering from this condition are a stressed lot. The emotional support of family, friends, and fellow-sufferers plays a large role in helping patients to cope.

It is also very important for the patient (and his family) to learn about the disease, to understand its dynamics and to be involved in their own treatment, as it will help them to tackle their problem in a better manner.

Below is a list of patient support groups for people with interstitial cystitis, painful bladder syndrome, and chronic pelvic pain.

COUNTRY
  

GROUP

MEETING SCHEDULE & LOCATION

CONTACT

Africa, Kenya

East Africa IC Support Group Nakuru Chapter

WHEN: Last Saturday of every month from 3:00 PM to 5:00 PM. Call to confirm meeting times and dates.
WHERE: Mereca Hotel Nakuru Kenyatta Avenue.
Also offer phone support for interested parties from patients to nurses, doctors, pharmaceutical companies and others.

James G. Mwangi
jgmwangi2003@ yahoo.com
245720391104

Argentina

ARACI Asociación Rosarina Afectados Cistitis Intersticial

Contact for support group meeting details.

Liliana Bacchi
President
menadel_dan@ hotmail.com
0341-4644164
Dorrego 3857-DTO.1
2000 Rosario, Argentina

Australia

IC Friends of Australia

A new Australian interstitial cystitis community forum has now been created to discuss life with IC and other related topics. The web address is - http://icfriends.forumotioncom

 

icfriends@live. com
 

Australia

Interstitial Cystitis Support Group of Australia

Contact Katya Buc.

Please include your name and address. You may subscribe to receive the newsletter, which is published 3 times year at a cost of AU$7.00 per year.

Katya Buc
PO Box 144, Richmond,
VIC 3121
Australia

Austria

ICA Österreich e.V

 www.ica-austria.at

 

elke.hufnagl@ica-austria.at
Christa Rammerstorfer, Chairwoman
ica.at-rammerstorfer@ gmx.at
Phone / Fax : 0043-7246-8448

Bolivia

La Paz IC Support Group

Contact Maria.

Maria Eulalia Anker
eulalia@ ceibo.
entelnet.bo
5912-2712761

Belgium

Interstitiële Cystitis Patiëntenvereniging België (ICPB) 

www.icpb.be

Josée DE RAA, president
info@icpb.be

Canada, Alberta

 

Available for phone support.

 

Ms. Edna Gabrielle
780-572-2233

Canada, Ontario

Ottawa IC Support Group
Meetings for people with IC, as well as anyone interested in learning more about IC.

WHEN: Next meeting is June 17 at 7 pm
WHERE: Terrace Room at City View United Church, 6 Epworth Ave.

DIRECTIONS: Follow Merivale Rd. south from Baseline Rd. Turn right onto Rossland, opposite Emerald Plaza. There’s a gas station at that corner, proceed to Pender which is on the left, and becomes Epworth. Look for City View United Church. Go left into the parking lot. Use the central door to the church. Parking is free.

Sept. 9: Painful Bladder Syndrome/Interstitial Cystitis Support Group. Caroline Allen, physiotherapist, who specializes in pelvic pain will be our guest speaker. City View United Church, 6 Epworth Ave. Wednesday, 7 p.m. Public is welcome; free parking. Please contact Inga Legere at 613-839-6188 for further information.

Inga Legere
613-839-6188

Anne Raina
613-733-5891

Canada, Ontario

Kitchener-Waterloo Interstitial Cystitis Support

 

WHEN: Visit online:
http://www.skatecrooked.com/ kwics/
WHERE: Basement of the Pioneer Park Church of God (11 Old Carriage Drive, Kitchener).

Ann
kwicsmail@gmail. com
519-896-1778

Kathy
calvert89@rogers. com
519-570-9045

Canada, Québec

Association de la cystite interstitielle (CI) du Québec

Visit online at www.cystiteinterstitielle.org

Françoise Robert
Présidente
frobert@videotron. ca

Canada, Victoria, British Columbia,

Victoria IC Support Network

Meetings will take place in Cafeteria Room A, 2nd floor, Royal Jubilee Hospital, 1:30-3:30 pm on the third Saturday of each month until June 2010.
Next meeting is March 20.

Contact information:
Colleen McGavin
Phone: 250-477-7855
Email: victoriaicsupport
@live.com

Czech Republic

 

www.uroklinika.cz

Libor Zamecnik, MD, PhD
libor.zamecnik@lf1.cuni.cz
Urologicka klinika VFN a 1. LF UK
Ke Karlovu 6
128 08 Praha 2
Czech Republic

Denmark

 

 

Steinunn Joergensen
Project Nurse
Department of Urology
stjr@herlevhosp.kbhamt.dk
Herlev Hospital, University of Copenhagen
DK-2730 Herlev, Denmark

England

Patient Advocate

Provides phone and email support, IC information, and healthcare provider referrals.

Iliana C. Brockman
Iliana@icrelief.com

France, Paris

Association française de la cystite interstitelle

For information, please email
http://orphanet.infobiogen.fr/ associations/AFCI

See also "AFCI - Présentation"

Françoise Watel
ci_france@hotmail. com
 AFCI
82 rue Albert
75013 Paris
France

Mexico

Asociacion de Cistitis Intersticial Mexico

 

www.aci-mexico.com

Florentina Ferreyra Lopez
flore@aci- mexico.com
52(55)54-04-89-16
Cerezos 87 casa 41
Col. Jardines de Atizapan
Atizapan de Zaragoza, Edo. De Mex.
Mexico
CP 5297

Netherlands

IC-Today

 

http://www.ic-today.com/

Contact: Moenier Oulad, ic2day@gmail.com


The list of support groups maintained by the Interstitial Cystitis Association can be viewed at-www.ichelp.org

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