Our Programs and Services
The Interstitial Cystitis Network is a social networking pioneer. Founded in 1994 as one of the first health websites, as well as the first web site dedicated to IC, its original mission was to deliver compassionate support to patients who were homebound, underserved and unable to afford the costly organizational membership and educational materials available at that time. In the past 17 years, the ICN has diversified dramatically, offering:
ICN Educational Services
Patients have different learning styles. Some learn best by reading, while others need to watch a video or listen to audio recordings. To the meet the diverse needs of our membership, we offer a variety of education tools including:
(1) The IC Optimist magazine, distributed quarterly to patients and providers throughout the world by email or snail mail.
(2) Our free monthly ICN E-Newsletter,
(4) The ICN “Living with IC Video” series has more than 20 videos for patients and family members who are newly diagnosed, seeking information and support.
(5) Because we believe that each patient should have access to brightest minds in the IC world (research and clinical), we’ve offered dozens of free “Meet the IC Expert” Guest Lectures on the web, the transcripts of which are available.
(6) ICN Apps deliver information directly to the cell phones and pads of patients using by iOS and Android devices. The ICN Food List app has been downloaded thousands of times.
(7) ICN Guide to Managing IC Flares – A resource guide to help patients learn the different types of IC flares that can occur, as well as self-help and prevention tips. It is currently available for free for patients who sign up for our monthly e-newsletter or can be purchased in the ICN Shop!
ICN Support Services
When the national ICA cancelled their support group program years ago, patients were left adrift as groups around the country disbanded. A pioneer in patient support, the ICN had been serving disenfranchised or geographically isolated patients for several years through the ICN Patient Forum.
ICN Research Services
With millions of patients now networking via the web, the opportunity to develop data that will reveal unique insights into interstitial cystitis is profound. The ICN Survey Center has conducted dozens of surveys, some of which have been published in medical journals and/or presented as poster sessions at medical conferences. We continue to support the research movement and provide critical opportunities for researchers and clinical trials to promote their efforts and seek study participants.
ICN Clinical Trial Services
The ICN Clinical Trial Center provides patient recruitment services for clinical trials in interstitial cystitis, chronic prostatitis, chronic pelvic pain syndrome and other related conditions. Clinical trials are used to determine whether new drugs or investigational treatments are both safe and effective. IC patients often choose to participate in studies because they may provide access to the latest investigational therapies and medications at no cost. Studies also allow the patient to interact with some of the best IC researchers in the country.
IC Awareness Month
The ICN is proud to administrate the annual IC Awareness Month campaign. Each September patents around the world unite to share their stories, raise awareness, request research funding and compassionate medical care. Learn more about the campaign on our website – http://www.icawareness.org
Low Income Services
A support group isn’t a support group if they don’t listen to the pressing needs of its members and, in this economy, it’s about saving money. Far too many patients have lost their health insurance, their jobs and/or face the difficult choice between buying food or buying medication. The ICN Drug Assistance Center provides listings of the most commonly used medication and the names of the programs available that can provide free medication if the patient meets their eligibility guidelines. We also provide a Drug Cost & Expense discussion forum where patients can share their money saving ideas and ask questions.
ICN Products Shop
When a patient is newly diagnosed, desperate for information, struggling to find bladder friendly items to eat or even a cushion to sit more comfortably, most have no idea where to go. The ICN Mail Order Center was established to create a resource for patients and providers who could, in one location, find various products, foods and supplies at as low a cost as we can provide. The proceeds from our shop support the more than 200,000 free user sessions which occur each month on our website.