About the ICN
Founded in 1995, the Interstitial Cystitis Network is a woman owned,"social advocacy" health education company dedicated to interstitial cystitis and other pelvic pain disorders. Using the internet, we create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 16 years, we have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at NO COST to the patients who visit our website.
Based in California, we believe that IC patients have much to give the world, as well as talent and experience to share. We encourage and nurture entrepreneurship for those who may have lost their jobs and/or health insurance. We employ only IC and pelvic pain patients in our offices and/or as subcontractors. We value social responsibility and adapt, whenever possible, green business practices. We encourage, for example, the delivery of our magazine via email to reduce paper consumption and reduce the end user subscription costs.
Read more about us: Blazing Glory (2010) - Pain Pathways (2011)
Mission & Motto
Support, Encouragement and Empowerment
"There is nothing so moving, not even acts of love or hate, as the discovery that one is not alone." - R. Ardrey
Our Services
The Interstitial Cystitis Network is a social networking pioneer. Founded in 1994 as one of the first health websites, as well as the original 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:
EDUCATIONAL OPPORTUNITIES - 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 bi-monthly ICN E-Newsletter, Twitter and Facebook pages.
(3) 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.
(4) 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.
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 and the live support chats available via the ICN Chat Room and we were able to pick up the slack with more than 40,000 registered patients. The advent of Facebook has changed the face of internet support again, though it is still going through a difficult transitional stage. You can now find more than a dozen IC support groups, some fairly divergent, on Facebook, including several specialty groups run by the 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.
LOW INCOME ADVOCACY - 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.
PRODUCTS & SUPPLIES - 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.
Our efforts are made possible by generous, long-term corporate sponsorships, ICN Patient & Professional Subscriptions and sales of educational materials and products in the ICN Mail Order Center.
As you use the ICN, we hope that you will share the information on our site with your physicians, families, friends and support group members. There are still millions of others with IC who are being told that there is no hope. They have no idea that there are new treatments or even basic diet information. There are physicians (especially primary care providers, family medicine & emergency room staff) who are unaware that IC is a legitimate disease. We must educate as many people as we can.
We encourage you to be an active participant in your medical care. Create a partnership with your doctor as you both seek to understand and find a treatment for your IC. Join the on-line support groups and activities so that you can gain support and then offer support to someone else in need. And, if you find our site helpful, please consider supporting our work by purchasing an ICN Subscription.
Jill Osborne, IC Network President & Founder
E-mail: jill@ic-network.com
Read more about Jill and her diagnosis of IC here!
