Interstitial Cystitis Association - ICA

Organization URL(s)

Other Contact Information

110 North Washington Street, Suite 340
Rockville, MD 20850

800-HELP-ICA (Voice - Toll-free)
301-610-5300 (Voice)
301-610-5308 (FAX)

Description

The Interstitial Cystitis Association of America (ICA) is a national nonprofit patient-driven organization acting as an informative and supportive agent to patients with interstitial cystitis (IC). The group also seeks to educate both the medical profession and the public about interstitial cystitis--once thought to be rare--which may affect more than 700,000 people in the United States. IC is a chronic inflammatory condition of the bladder wall which frequently goes undiagnosed. Although the cause is unknown and no treatment is uniformly effective for everyone, many treatments are available and the vast majority of patients obtain relief. Symptoms include bladder pain, urinary urgency, day and night frequency (up to 60 times per day), suprapubic (lower abdominal) or perineal (area between scrotum and anus in men, or vagina and anus in women) pain and pressure. Interstitial cystitis is most often found in women but can affect anyone. ICA supports research through its own Pilot Research Program, and through the Fishbein Family IC Research Foundation, which it administers. The ICA is supported by donations. Support: We offer one-on-one support through our National Patient Support Representatives, via phone, mail or e-mail; and through the IC Question Corner on our Web site, where patients can have questions answered by trained IC staff people. We also offer “IC Connections,” a telephone support list program with lists for patients trying various treatment options, as well as for different demographic groups—men with IC, children with IC, “Twentysomethings,” etc. Events: The ICA sponsors periodic national patient meetings featuring workshops and plenary sessions with the top IC physicians and researchers. The ICA cosponsors with the NIDDK, International Scientific Symposiums for IC clinicians and researchers. The ICA sponsors regional one-day IC Forums for patients at which selected local physicians, researchers, and other health care providers give presentations and engage in dialogue with patients.

Online Resources

FAQ’s: Interstitial Cystitis
http://www.ichelp.org/whatisic/TheMostFAQ.html
Support Groups: Interstitial Cystitis Association
http://www.ichelp.org/PatientInformation/SupportGroups/MeetingAnnouncements/tabid/253/Default.aspx
Treatment Options for Interstitial Cystitis
http://www.ichelp.org/PatientInformation/TreatmentOptions/TreatmentGuidelines/tabid/85/Default.aspx

Print Resources

The ICA offers numerous brochures and fact sheets on interstitial cystitis, as well as book, news and journal reprints. Serial publications: ICA Update (newsletter), quarterly—information on treatment, research and coping strategies. ICA Physician Perspectives (physician newsletter)—quarterly. Summarizes recent treatment developments and research results and opportunities. Offered in print and e-mail versions for physicians and other health care providers. Café ICA (electronic newsletter)—bi-weekly digest of recent treatment, research, coping strategies, and other patient-oriented IC news. Available on our Web site and sent via e-mail to those who request it.