CCHS Network
CCHS Network is a 501(c)(3) patient advocacy non-profit serving the global population of approximately 4,000–5,000 individuals affected by Congenital Central Hypoventilation Syndrome through community building, education, research funding, and direct patient support programs.
- Company typePrivate
- Founded1989
- HeadquartersOneonta, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What CCHS Network does
CCHS Network is a 501(c)(3) tax-exempt non-profit patient advocacy organization that serves the global population affected by Congenital Central Hypoventilation Syndrome (CCHS), an ultra-rare orphan disease estimated to affect approximately 4,000–5,000 individuals worldwide. Founded in 1989 and headquartered in Encinitas, California, the organization describes itself as the largest association of CCHS patients and families globally. Its mission centers on building community, empowering patients, and championing research for a lifelong genetic disorder with no available treatments beyond mechanical ventilation.
The organization's core offerings include the One World Registry (a global patient data registry supporting advocacy and research mobilization), the CCHS Grant Awards Program (annual research funding capped at direct costs), biennial international family conferences, annual international science conferences, and the Durable Medical Equipment Grant program for direct patient support. Supporting services include a physician directory, a genetic testing centers directory, educational videos, and a "Casting a Light Stories" content series. The organization also runs an annual CCHS Day awareness campaign and a Firefly Circle monthly recurring giving program. The technology stack is minimal — a WordPress-based website at cchsnetwork.org, a Vimeo channel, and standard social media profiles — with no proprietary software platform or AI components; operations are volunteer-led with a 1-10 person team.
The business model is donation-driven rather than commercial. Revenue consists of one-time donations, recurring monthly gifts through the Firefly Circle, and proceeds from the annual CCHS Day event (2025: $317,000 raised; cumulative ~$3 million over the past decade). Outflows are directed toward research grants, family and research conferences, the One World Registry, and direct patient support programs. There are no paying customers, no pricing model, no enterprise contracts, and no shareholders; the organization is governed by a volunteer Executive Board and Board of Directors and operates as a registered charity (EIN: 22-3634814).
CCHS Network firmographics
Firmographics- Name
- CCHS Network
- Legal name
- CCHS Network
- Website
- https://cchsnetwork.org
- Company type
- Private
- Founded year
- 1989
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- CCHS Network is a 501(c)(3) patient advocacy non-profit serving the global population of approximately 4,000–5,000 individuals affected by Congenital Central Hypoventilation Syndrome through community building, education, research funding, and direct patient support programs.
- Ownership category
- akta.pro rank
Where CCHS Network is headquartered
LocationHeadquarters
- HQ city
- Oneonta
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
CCHS Network business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Others, Marketing or Sales, Operations, Technology or R&D
Revenue model
- Donations and Fundraising: The organization raises funds through individual donations, recurring monthly Firefly Circle membership program, one-time gifts, and annual CCHS Day fundraising events. The organization exceeded its 2025 goal, raising $317,000.
- Research Grants: CCHS Network funds innovative clinical, basic translational, or epidemiological research through annual grant awards managed by the Research Advisory Board. Grants are limited to direct costs with up to $10,000 for equipment, with no indirect or overhead costs permitted.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels5 records
CCHS Network product offering
Product offeringCore offering
CCHS Network is a 501(c)(3) non-profit patient advocacy organization that provides education, support, and research funding for individuals and families affected by Congenital Central Hypoventilation Syndrome (CCHS), an ultra-rare genetic disorder. Its core offerings include the One World Registry (a global patient registry), the CCHS Grant Awards Program (funding clinical and translational CCHS research), biennial Family Conferences, the International CCHS Science Conference, Durable Medical Equipment Grants, and curated resource directories for physicians and genetic testing centers.
Product overview
CCHS Network operates as a patient advocacy and research support organization offering a suite of community-focused services. The core offerings include the One World Registry (a global patient registry for advocacy and research mobilization), the CCHS Grant Awards Program (funding innovative research), and the Family and Science Conference Programs (biennial international events). Supporting services include the Firefly Circle monthly giving program, Durable Medical Equipment grants, CCHS Day annual awareness campaign, newsletter subscription, and resource directories (physician lists, genetic testing centers). These services work together to fulfill the organization's mission of building community, empowering patients, and championing research for this rare genetic disorder affecting approximately 4,000-5,000 individuals worldwide.
Differentiator
Problem solved
Functional benefit
Brands
- Firefly Circle: Monthly giving program where supporters select a recurring monthly donation amount to provide ongoing support for the CCHS community. The firefly symbolizes the beacon of light the organization provides during dark moments for CCHS families and represents the steady glow of ventilators that sustain loved ones.
Products and services
- One World Registry A global patient registry that connects and mobilizes CCHS families for advocacy, education, and research purposes. It serves the worldwide CCHS patient and family community and supports research mobilization by enabling participation across the population of 4,000-5,000 affected individuals.
- CCHS Grant Awards Program An annual grant program funding innovative clinical, basic translational, or epidemiological research on Congenital Central Hypoventilation Syndrome. Grants are limited to direct costs, with up to $10,000 available for equipment and no indirect or overhead costs permitted. The program is administered by the CCHS Network Research Advisory Board.
- Durable Medical Equipment Grant A need-based grant program providing durable medical equipment to CCHS patients and families to help offset the financial burden of equipment required to manage the lifelong condition, which often involves mechanical ventilation and related respiratory support.
- Family Conference Program Biennial international family conferences providing education, support, and networking opportunities for CCHS patients and families. These events bring together the global CCHS community for in-person connection, peer support, and educational programming.
- International CCHS Science Conference International scientific conferences bringing together researchers and clinicians to advance CCHS research, with the 6th International CCHS Science Conference held in September 2023 at Disney World Beach Club in Orlando, FL. The program includes speaker sessions covering clinical, translational, and epidemiological findings related to CCHS.
- Physician List Directory A curated directory of healthcare providers with experience treating CCHS patients, helping families connect with clinicians knowledgeable about this ultra-rare disorder and its complex respiratory and autonomic management requirements.
- Genetic Testing Centers Directory
Quantifiable outcome
- 4000-5000 individuals affected worldwide served by the organization
- +1 more outcomes
Companies that use CCHS Network
Customer profileSegments2 records
Ideal customer profiles2 records
CCHS Network technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
CCHS Network partnerships and signals
Strategic signalScale indicators5 records
Recent moves6 records
Expansion highlights5 records
CCHS Network competitors and assessment
Company assessmentRegional players
- EURORDIS – Rare Diseases Europe: EURORDIS is the European umbrella for rare-disease patient organizations. It is comparable in advocacy model and rare-disease convening role to CCHS Network, but is regionally focused on Europe and addresses 6,000+ conditions rather than a single disease.
Broad incumbents
- EveryLife Foundation for Rare Diseases: EveryLife Foundation advocates for rare-disease policy and research funding at the federal level. It is comparable to CCHS Network in mission and donor-supported nonprofit model, but addresses rare diseases broadly rather than CCHS specifically.
- Rare Diseases International: Rare Diseases International is the global alliance of rare-disease patient organizations. It is comparable to CCHS Network as a rare-disease advocacy coalition but operates at multi-country scale rather than as a single-disease nonprofit.
- Global Genes: Global Genes is a rare-disease advocacy and patient-support nonprofit. It shares the CCHS Network's mission of education, community building, and research support, but operates as a broad umbrella rather than a single-disease foundation.
- Genetic Alliance: Genetic Alliance is a nonprofit health advocacy organization focused on genetic and rare conditions. It is comparable to CCHS Network in serving small genetic disease communities through registries and family support, but at portfolio scale.
- National Organization for Rare Disorders (NORD): NORD is the largest US umbrella advocacy organization for rare diseases. It is comparable to CCHS Network as the broad incumbent operating in the same rare-disease patient-advocacy space, but at portfolio scale across 7,000+ conditions rather than focused on a single disease.
Emerging players
- Orphanet: Orphanet is a reference portal for rare diseases and orphan drugs. It is comparable to CCHS Network as part of the rare-disease information ecosystem but operates as a data/knowledge infrastructure provider rather than a community- and donor-driven advocacy nonprofit.
Direct peers
- National Down Syndrome Society (NDSS): NDSS is a single-condition patient advocacy nonprofit focused on Down syndrome. It is directly comparable to CCHS Network in mission, structure, and operating model — community building, research funding, family conferences, and donor-supported operations for a specific genetic condition.
- Children's Tumor Foundation: Children's Tumor Foundation is a single-disease (neurofibromatosis) research and advocacy nonprofit. It is directly comparable to CCHS Network in funding research grants, running patient registries, hosting scientific conferences, and operating on donor support for a rare genetic condition.
- Prader-Willi Syndrome Association (USA): PWSA is a single-disease patient advocacy nonprofit for Prader-Willi syndrome. It is directly comparable to CCHS Network in operating model — research grants, family support services, conferences, and donor-funded operations for a rare genetic condition.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights6 records
Customer concentration
CCHS Network social profiles
Digital presenceCCHS Network compliance and trust
Trust signalCompliance1 record
CCHS Network financial estimates
Financial estimateRevenue estimate
Valuation estimate
CCHS Network leadership team
Management profileNumber of profiles
Profiles13 records
CCHS Network subsidiaries and ownership
Company hierarchySubsidiaries1 record
CCHS Network funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
CCHS Network M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about CCHS Network
What does CCHS Network do?
CCHS Network is a 501(c)(3) non-profit patient advocacy organization that provides education, support, and research funding for individuals and families affected by Congenital Central Hypoventilation Syndrome (CCHS), an ultra-rare genetic disorder. Its core offerings include the One World Registry (a global patient registry), the CCHS Grant Awards Program (funding clinical and translational CCHS research), biennial Family Conferences, the International CCHS Science Conference, Durable Medical Equipment Grants, and curated resource directories for physicians and genetic testing centers.
Is CCHS Network a public or private company?
CCHS Network is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was CCHS Network founded?
CCHS Network was founded in 1989. It employs 1 to 10 people.
Where is CCHS Network based?
CCHS Network is headquartered in Oneonta, United States, in the North America region.
How does CCHS Network make money?
Two revenue lines are on record. Donations and Fundraising is the primary driver. The others are research Grants.
Who are CCHS Network's main competitors?
EURORDIS – Rare Diseases Europe is listed as a regional player. Broad incumbents are EveryLife Foundation for Rare Diseases, Rare Diseases International, Global Genes, Genetic Alliance and National Organization for Rare Disorders (NORD). Orphanet is listed as an emerging player. Direct peers are National Down Syndrome Society (NDSS), Children's Tumor Foundation and Prader-Willi Syndrome Association (USA).
Does CCHS Network have an API?
No public API is recorded for CCHS Network.