Interstitial Cystitis Association Of America

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.

CDC/Boston Children's Hospital sub-grant: As part of the CDC Cooperative Agreement, the ICA's targeted public education and outreach effort focused on two elements: 1) social media and digital media outreach strategy; and 2) minority recruitment outreach.CDC/Inspire subgrant: ICA was responsible for recruiting participants, providing timely feedback to the Inspire and Boston Children's Hospital (BCH) on drafts of research tools (i.e. surveys) and dissemination materials including reports and manuscripts, and attending meetings to facilitate strong communication and understanding of the research results among grant partners.