What Hydrocephalus Association does

The Hydrocephalus Association (HA) is a 501(c)(3) nonprofit organization founded in 1983 and headquartered in North Bethesda, Maryland, that serves as the largest US nonprofit dedicated solely to hydrocephalus. Its mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition, which impacts over one million Americans. HA operates a community-and-research-driven model serving five primary constituencies: patients with hydrocephalus across all age groups, adults with Normal Pressure Hydrocephalus (NPH), parents and caregivers, hydrocephalus researchers and scientists, and healthcare providers. The organization has invested $17 million directly in research and helped secure $94 million in additional federal grants for HA-funded researchers, with 18 preclinical drug therapies currently in development through its research program.

HA's core technology infrastructure comprises the HydroAssist® mobile application for symptom tracking, the HANDS Research Portal for managing grant applications and clinical study participation, the HAPPIER Patient Registry (published in a scientific journal as the first major patient-reported dataset in hydrocephalus research), and a Hydrocephalus Resource Library containing 400+ curated, expert-reviewed educational resources. Supporting programs include HydrocephalusCONNECT peer support matching, the RAISE Resilience Program for caregivers, community support groups, the WALK to End Hydrocephalus events (8,500+ annual participants), and the HA CONNECT National Conference.

HA's revenue model is donation-driven, with diversified streams including individual donations, corporate sponsorships, merchandise sales (e.g., My Hydro Bear), participant-driven fundraising events, and leveraged federal research grants. All patient-facing services are provided free of charge. The organization is governed by an independent board and operates without parent company ownership, holding a 2026 four-star Charity Navigator rating, 2025 Top Rated Nonprofit designation from Great Nonprofits, and Gold Seal of Transparency from Candid/GuideStar.

Name

Hydrocephalus Association

Legal name

Hydrocephalus Association

Website

https://hydroassoc.org

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

51–100 employees

Short description

The Hydrocephalus Association is the largest US 501(c)(3) nonprofit dedicated to hydrocephalus, serving patients of all ages, caregivers, researchers, and clinicians through education, peer support, a published patient registry, and $17M+ in cumulative research investment.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Health Nonprofit

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Services for the Elderly and Persons with Disabilities (624120), Social Advocacy Organizations (8133), Grantmaking and Giving Services (81321)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

akta.pro secondary industry

Public Health Program Grants Management & Administration (HLAJALAC)

Keywords

• Patient advocacy services
• Medical research funding
• Rare disease support
• Health education resources
• Community health programs

Headquarters

HQ city

Bethesda

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 Contributions: Primary revenue stream from individual donors, corporate sponsors, and supporters. Multiple giving mechanisms including one-time donations, planned giving, stock donations, and workplace giving/matching gifts.
2. Corporate Sponsorship: Corporate sponsorship program generating revenue from companies that support the hydrocephalus community. Includes opportunities to sponsor WALK events, the HA CONNECT conference, and other programs.
3. Merchandise Sales: The HA Shop sells merchandise including My Hydro Bear (companion stuffed animal for children with shunt), awareness apparel, and branded items. Revenue supports HA programs and mission.
4. Fundraising Events: Revenue from participant-driven fundraising events including WALK to End Hydrocephalus, Endurance Program (marathons), and Games4Brains program. Participants raise funds individually and collectively.
5. Federal Research Grants: HA's research program has helped secure additional federal grants for researchers. These grants advance hydrocephalus research and are leveraged through HA's funding of initial research that attracts federal follow-on funding.

Go-to-market motion3 records

Distribution channels7 records

Marketing channels12 records

Core offering

The Hydrocephalus Association is a 501(c)(3) nonprofit that provides free patient education, peer support, community programs, and research funding for the hydrocephalus community. Its offering centers on a comprehensive resource library, the HANDS research portal, the HAPPIER patient registry, the HydroAssist® mobile app, peer support matching, and the annual HA CONNECT National Conference. The organization also raises and directs research funding, having invested $17 million directly and helped secure $94 million in additional federal grants.

Product overview

The Hydrocephalus Association operates primarily as a non-profit patient advocacy and support organization rather than a product company. Its core digital offerings include the HydroAssist® Mobile Application for symptom tracking, the HANDS Research Portal for clinical research participation, and the Hydrocephalus Resource Library for educational content. Additional offerings include My Hydro Bear (a therapeutic companion product for children) and various support programs including peer support networks, webinars, podcasts, educational events, summer camp, scholarship program, and the annual HA CONNECT national conference. These products and programs collectively support patients, families, and researchers across the hydrocephalus journey.

Differentiator

Problem solved

Functional benefit

Brands

• HydroAssist: Mobile application for tracking symptoms and managing health information for people with hydrocephalus.
• Hydro Heroes Unite
• HA CONNECT
• WALK to End Hydrocephalus
• HAPPIER Registry
• HydrocephalusCONNECT
• RAISE Resilience Program

Products and services

• HydroAssist® Mobile Application
• My Hydro Bear A plush companion bear with a shunt, designed to help children with hydrocephalus understand their condition and feel supported during their healthcare journey. Available for purchase through the HA Shop to support the Association's mission.
• HANDS Research Portal Online research portal that enables investigators to submit HA funding applications, access funding opportunities, and allows patients to participate in hydrocephalus clinical research, including the HAPPIER Patient Registry.
• Hydrocephalus Resource Library Comprehensive searchable online library offering 400+ educational resources including toolkits, medical information, expert videos, podcasts, and daily life guidance for individuals affected by hydrocephalus across all life stages.
• HydrocephalusCONNECT Peer Support Program One-on-one peer support matching service that pairs patients, parents, and caregivers with trained volunteers who have personal experience with hydrocephalus, providing emotional support and practical guidance free of charge.
• HA CONNECT National Conference on Hydrocephalus Annual national conference providing resources and connections addressing the medical, educational, and social complexities of living with hydrocephalus, featuring keynote speakers, expert panels, and community networking for patients, caregivers, and healthcare providers.

Quantifiable outcome

• $17 million invested directly in research, with $94 million in additional federal grants awarded to HA-funded researchers
• +3 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Seven partnerships are on record, tiered minor and core.

• NeuroKidsminorStrategic or Co-development Partner · 20 November 2024NeuroKids, led by Dr. Benjamin Warf, was featured in the House Foreign Affairs Subcommittee hearing on November 20 to discuss global brain health challenges and hydrocephalus care in developing countries. HA participates in related advocacy efforts.
• Rudi Schulte Research Institute (RSRI)coreStrategic or Co-development PartnerRSRI is a key collaborator on HA's research program, co-hosting major research workshops including the iNPH Research Workshop in October 2024 with over 70 experts and the Hydrocephalus Engineering Workshop in Columbus, Ohio with over 90 participants. The partnership focuses on advancing understanding of cerebrospinal fluid dynamics and engineering solutions for hydrocephalus treatment.
• Defense Health Research Consortium (DHRC)coreStrategic or Co-development PartnerHA partnered with DHRC to host a research-centered Congressional Briefing on Capitol Hill, combining their expertise in advocating for defense-related health research and hydrocephalus funding. The partnership leverages DHRC's federal health research advocacy experience with HA's patient community.
• Hydrocephalus Clinical Research Network (HCRN) and Adult Hydrocephalus Clinical Research Network (AHCRN)coreStrategic or Co-development PartnerHA's clinical research networks focus on improving the lives of those living with hydrocephalus. HCRN and AHCRN bring together clinicians and researchers to conduct multi-center studies, share data, and advance evidence-based treatment protocols for hydrocephalus.
• Everylife Foundation for Rare DiseaseminorStrategic or Co-development PartnerHA participates in the Everylife Foundation's Rare Disease Week, bringing members of the Hydrocephalus Association Action Network to Washington DC to advocate for rare disease policies and funding.
• University of Cincinnati (host of 2024 Non-Invasive Therapy Research Workshop)minorStrategic or Co-development PartnerHA collaborated with the University of Cincinnati to host the 2024 Research Workshop focused on non-invasive treatment options for hydrocephalus, bringing together over 75 experts to advance less invasive therapeutic approaches.
• Cassell CommunicationsminorOthersExternal vendor providing website design and technical support services for the Hydrocephalus Association's digital presence.

Scale indicators12 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Muscular Dystrophy Association: Long-standing disease-specific nonprofit funding neuromuscular research, supporting patients across the lifespan, and running signature fundraising events (MDA Shamrocks, galas) — analogous funding, advocacy, and patient-program architecture.
• EveryLife Foundation for Rare Diseases: Advocacy nonprofit for the rare disease community that co-organizes Rare Disease Week on Capitol Hill — already a partner of HA — and applies a similar policy-and-advocacy-led model across rare conditions.
• Parkinson's Foundation: Neurological condition advocacy nonprofit with research funding, clinical research networks, patient education, and policy advocacy — particularly relevant given clinical overlap with normal pressure hydrocephalus (NPH) misdiagnosis.
• National Multiple Sclerosis Society: Larger-scale neurological disease advocacy nonprofit with research-grant programs, clinical care networks, Walk MS events, and federal advocacy — operates the same community-and-research-led GTM motion at greater scale.
• Spina Bifida Association: Patient-advocacy nonprofit dedicated to a specific congenital neurological condition (spina bifida), operating research funding, peer-support networks, resource libraries, and advocacy — directly comparable model to HA in scale, structure, and disease-specific mission.
• Epilepsy Foundation: U.S. patient-advocacy nonprofit for a chronic neurological condition, combining research funding, clinical networks, peer support, education, and Capitol Hill advocacy — very similar operating playbook to Hydrocephalus Association.

Broad incumbents

• Alzheimer's Association: Largest U.S. dementia-focused nonprofit with significant research funding, 24/7 helpline, and walk fundraising — directly relevant because NPH is frequently misdiagnosed as Alzheimer's, putting the two organizations in overlapping clinical and donor-mindshare territory.
• American Cancer Society: Large-scale disease-specific nonprofit with research-grant programs, peer support, and Relay For Life events — sets the operational benchmark and donor-competition benchmark HA is benchmarked against in the nonprofit sector.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization supporting all rare-disease patient communities, including rare neurological conditions like hydrocephalus; HA interacts with NORD's policy and research-grant programs as a member organization.

Emerging players

• Child Neurology Foundation: Smaller-scale nonprofit supporting children with neurological conditions (including hydrocephalus), with overlapping audience in pediatric hydrocephalus — directly overlaps HA's parent-segment and pediatric focus.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/hydroassoc
• Facebookfacebook.com/HydroAssoc
• LinkedInlinkedin.com/company/hydrocephalus-association

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Hydrocephalus Association