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 | [email protected] 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 [email protected] |
| 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 [email protected] Urologicka klinika VFN a 1. LF UK Ke Karlovu 6 128 08 Praha 2 Czech Republic | |
| Denmark | Steinunn Joergensen Project Nurse Department of Urology [email protected] 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 [email protected] |
| 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, [email protected] |
The list of support group maintained by the Interstitial Cystitis Association can be viewed at-www.ichelp.org
