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Nonprofit Overview

Causes: Diseases of Specific Organs, Health, Medical Disciplines Research, Specifically Named Diseases

Mission: Founded in 1984, the ICA promotes and funds research; educates the medical community and public; advocates for IC patients, healthcare providers, and researchers; and offers support for IC patients and their families.

Programs: Centers for disease control and prevention interstitial cystitis (ic) cooperative agreement - the purpose of the program is to promote public awareness and partnership, provide ic education for the general public and for healthcare providers, and develop and enhance communication channels to allow for improved interaction and information sharing among those with ic, advocates for persons with ic and their families, those who provide care and services for persons with ic, researchers, and public health scientists.

advocacy: the disabling pain, urgency and frequency of interstitial cystitis (ic) stays with patients for their lifetime. The ica raises awareness among legislators and key decision makers about the need for expanded research funding to find a cure and healthcare options to address the special needs of ic patients.

education: the ica delivers critical health information and support to patients, caregivers, healthcare providers, researchers and the public. Programs include medical education programs for healthcare providers; seminars about ic for patients, family members and the public; interactive services that teach ic patients self-care strategies; educational resources, e. G. The ic update magazine and weekly ica enews. The ica collaborates with the centers for disease control and prevention (cdc) on ic awareness programs.

research: each ic diagnosis means a new fight for someone's spouse, parent, child or friend. There is no cure for ic. Through the "imagine no ic" pilot research program, the ica funds preliminary research, allowing scientists to gather data required to obtain larger grants for further exploration of the cause, better treatments, and ultimately a cure. Our team tracks ic research and disseminates findings across media platforms. Ica leadership also serve on government and industry research advisory committees.

Community Stories

5 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 4

I think that the ICA has help to bring awarness and education not only to the Drs and caregivers, but the the people who are living with this chronic conditon. It will change your life. I thank the ICA for there efforts and support to people with IC. thanks

8

Client Served

Rating: 5

When I was told I had IC in 1990 there was very little information available for doctors or patients. I was fortunate that I had one of the best doctors in the nation who directed me to a support group that had materials from the ICA. Soon after that my sister encouraged me to get a computer and "on the net" (this was the olden days!) and join online chat groups that she had found about IC. I've been using the support system of the ICA ever since. Whether it's checking on their website for new treatment protocols, checking the Facebook updates, getting my ICA email updates or directing newly diagnosed people to their website, the ICA plays a critical part in IC treatment for anyone who is going through the journey of learning to live with IC and the many autoimmune issues they will also have to deal with. The ICA freely shares information, support and guidance to members and non-members, patients, family and doctors; and has been building their website resources as well as trying to keep support groups going in real locations as well as on the internet. The ICA has given great support to my doctor, Dr. Robert Evans, who is dedicated to IC research and finding a way to relieve the pain that limits our lives each day. They have given him a platform to share his knowledge and a place to share his ideas with other researchers. I'm sure their support has allowed him to get some of the funding and attention he needs to continue the research he is doing. I know that research will eventually help me on a personal level, because he SEES me and he KNOWS me and how IC AFFECTS me, and he's working hard to find something to HELP me and others, and the ICA HELPS HIM HELP ME.

2

Client Served

Rating: 5

The ICA website is a wealth of information. For t those newly diagnosed, it is absolutely essential they learn as much as they can from ICA. I've been diagnosed for over 4 years now and the only people I've run into that have heard about IC are urologists and ob/gyns. I wish ICA could produce a commercial on TV to promote awareness. This is such a painful disease and we deserve more attention and research done on finding a cure.

2

Client Served

Rating: 5

I found this website by doing an online search when I was diagnosed last Summer. They had the most up to date information on everything for diet to meds to keeping journals to finding Helathcare providers. My Urologist, who is great, was not a memeber and did not have materials. I reccomended the website to both him and another Health Professional and they thought it was great. I have ordered several books, and they have helped me figure out my diet restrictions. I owe a ton of thanks to ICA for helping me figure out where to go and to have some hope for the future.

2

Client Served

Rating: 5

When I was diagnosed with IC I had never heard of the condition. When finding this organization on the web I felt I was not alone with my suffering. The diet suggestions and other helpful information helped me get through the worst of it and even persuade my urologist to try a procedure that make my life better.