Interstitial Cystitis Association of America (ICA)

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 ICA Update Magazine and weekly ICA eNews. The ICA collaborates with the Centers for Disease Control and Prevention (CDC) on IC awareness programs.

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.

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.

Research: Each IC diagnosis means a new fight for someone's spouse, parent, child or friend. There is no cure for IC. Our team tracks IC research and disseminates findings across media platforms. ICA leadership also serve on government and industry research advisory committees.