What Interstitial Cystitis Association does

The Interstitial Cystitis Association (ICA) is a 501(c)(3) nonprofit patient advocacy organization (Federal ID #13-3292137) that serves as the central coordinating body for the interstitial cystitis/bladder pain syndrome (IC/BPS) community in the United States. ICA addresses a clinical condition affecting an estimated 4 to 12 million people in the US (3 to 8 million women and 1 to 4 million men, plus pediatric cases) through three interconnected stakeholder groups: patients and caregivers, healthcare providers, and researchers. Its mission centers on advocacy for research funding, awareness, education, and improved diagnosis and treatment for IC/BPS.

ICA's product surface is a digital-first suite of non-commercial resources rather than a traditional software platform. The core offering is ichelp.org, a content portal covering symptoms, diagnosis, treatment guidelines (including AUA-based recommendations), diet, medications, complementary therapies, insurance and disability navigation, and lifestyle management. Adjacent products include the monthly ICA Research Digest and organizational newsletter, the quarterly ICA Update Magazine, the Connected Journey: Life with IC podcast, the Navigating IC/BPS: Conversations with Experts webinar series (with a $25 minimum donation for paid recordings), the Healthcare Provider Registry and Support Group Registry, the Voices of Hope Patient Program, an educational video library, and an Advocacy Program that trains patients as self-advocates.

ICA's business model is donation-driven. Revenue comes from individual donations, corporate partnerships (including Prelief as a named partner), and fundraising events such as Walk For An IC Cure. Core services are provided free of charge to patients, with select monetized touchpoints (webinar minimum donation, possible resource purchases). Distribution is multi-channel: the website, email, Facebook, Twitter/X, Instagram, YouTube, podcasts, webinars, and in-person advocacy events. Geographic scope is primarily the US, though educational content has been translated into Spanish, Chinese, German, French, Italian, and Japanese, indicating an intent to reach non-English-speaking and potentially international audiences. The organization operates from a single mailing address in Akron, OH (388 S. Main Street, Suite 440-#157) under board governance, with no disclosed headcount and no parent organization.

Name

Interstitial Cystitis Association

Legal name

Interstitial Cystitis Association

Website

https://ichelp.org

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

1–10 employees

Short description

The Interstitial Cystitis Association is a 501(c)(3) nonprofit patient advocacy organization serving as the central US hub for the interstitial cystitis/bladder pain syndrome community, delivering free education, support groups, provider registries, webinars, and research advocacy to millions of patients, caregivers, providers, and researchers.

Ownership category

akta.pro rank

Headquarters

HQ city

Mclean

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: ICA is a 501(c)(3) nonprofit organization funded primarily through donations from individuals, corporate partners, and fundraising events. Federal ID #13-3292137.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

The Interstitial Cystitis Association (ICA) is a 501(c)(3) nonprofit patient advocacy organization that provides educational resources, support communities, and advocacy programs for people affected by interstitial cystitis/bladder pain syndrome (IC/BPS). Its core offerings include a comprehensive information portal, monthly research and organizational newsletters, a webinar series featuring medical experts, registries of healthcare providers and support groups, a podcast and video education center, treatment guidelines, and a patient advocacy program.

Product overview

The Interstitial Cystitis Association (ICA) is a nonprofit health advocacy organization operating a comprehensive digital platform focused on interstitial cystitis/bladder pain syndrome (IC/BPS). The organization does not offer a traditional software product but provides a suite of informational resources, support services, and educational programs. This includes the ICA Website & Information Portal as the central hub, the monthly ICA Research Digest newsletter and organizational newsletter for communications, the Voices of Hope Patient Program for direct patient support, the Navigating IC/BPS: Conversations with Experts webinar series featuring expert-led educational content, a Healthcare Provider Registry connecting patients with qualified doctors, a Support Group Registry including online and local communities, the Connected Journey podcast, an Video Education Center with instructional content, comprehensive IC/BPS Treatment Guidelines, and an Advocacy Program empowering patients to become self-advocates. These offerings work together to serve the ICA's mission of improving diagnosis and care for people affected by IC/BPS.

Differentiator

Problem solved

Functional benefit

Products and services

• ICA Website & Information Portal

Quantifiable outcome

• Serves millions of IC/BPS patients across the United States

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• Preliefcorporate partnerOthersPrelief is a corporate partner of ICA. Prelief (calcium glycerophosphate) is an over-the-counter product that helps IC/BPS patients reduce dietary triggers by neutralizing acids in foods and beverages. The partnership provides product information and resources to ICA community members.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): Major umbrella advocacy organization for rare disease patients. Comparable to ICA as a peer in patient advocacy operating model (education, research funding advocacy, patient navigation) targeting niche chronic disease populations.
• Patient Advocate Foundation: National nonprofit providing case management, healthcare navigation, and advocacy for patients with chronic and rare conditions. Operates a similar patient-education-and-advocacy model to ICA but serves a broader condition set.
• American Autoimmune Related Diseases Association (AARDA): Advocacy organization for autoimmune diseases. Comparable to ICA in its reliance on awareness campaigns, education, support networks, and research funding advocacy for a chronic disease population.
• Endometriosis Association: Patient advocacy and education organization for endometriosis, a chronic pelvic pain condition in women with substantial symptom overlap with IC/BPS. Runs an analogous support, education, and research-advocacy model to ICA.
• Interstitial Cystitis Network: Independent patient information and community site dedicated exclusively to interstitial cystitis. It directly competes with ICA for the same IC/BPS patient audience, offering similar education, support, and physician resource directories.
• Simon Foundation for Continence: Nonprofit dedicated to supporting people with incontinence and related bladder dysfunction, including IC/BPS patients. Comparable to ICA in its focus on bladder conditions, patient education, and grassroots awareness.
• Bladder Cancer Advocacy Network: Patient advocacy organization serving people affected by bladder cancer. It mirrors ICA's operational model (community building, education, research advocacy) within the same urological/bladder disease category.

Broad incumbents

• National Kidney Foundation: Large, established patient advocacy organization covering kidney and urological diseases. Uses a similar patient-education, research-funding, and awareness model as ICA but operates at far greater scale and across a broader disease portfolio.
• American Urological Association: Primary U.S. professional society for urologists, including those treating IC/BPS, and publisher of the AUA treatment guidelines that ICA distributes. Operates in the same clinical domain but from a clinician/research perspective rather than ICA's patient-advocacy focus.

Others

• International Pelvic Pain Society: Medical society focused on chronic pelvic pain syndromes that frequently co-occur with IC/BPS. Shares the same clinical condition space as ICA but operates as a clinician/professional society rather than a patient advocacy organization.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/ichelp
• YouTubeyoutube.com/user/ICHelp
• Facebookfacebook.com/InterstitialCystitisAssociation
• Instagraminstagram.com/icahelp

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Interstitial Cystitis Association