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Interstitial Cystitis Association
April 9, 2012

I've been asked to write a follow up review of the ICA and, sadly, must report that in 2011 the organization has let go most of their staff due to the loss of their federal funding. They are now using a non-profit management organization to manage the day to day operations. They seem to be "in limbo" made all the more challenging by their disconnect from their own membership who, yet again, are not involved in the planning and goal setting for the organization. Their lack of transparency remains a concern. I would be much more inclined to donate again if meetings were public and members/donors were given some way to be involved in the goal setting and planning of the organizations mission.

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Interstitial Cystitis Association
April 8, 2011

As much as I like this organization, it is woefully lacking in transparency. I would like to see public board meetings, public annual meetings for the membership and, in general, an opportunity for members to participate in the organization and the selection of research studies to be funded. I am disappointed that they cancelled their support group program. They don't seem to have the patient as their first priority.

The Great!

I've personally experienced the results of this organization in...

several ways. They gave me the first information on IC that I had. They gave me a physicians list, a diet list and some nice support group leaders to talk with.

Ways to make it better...

If I had to make changes to this organization, I would...

open the doors and become fully transparent. Involve the IC patients far more. We have ideas that have value.

Volunteer & I was a support group leader.

Review from Guidestar