The Cluster Headache Support Group
The Cluster Headache Support Group is a 501(c)(3) non-profit founded in 2010 that provides patient education, peer support, advocacy, and clinical trial recruitment for cluster headache sufferers, caregivers, and healthcare providers through a website, international Facebook community, and partnership network.
- Company typePrivate
- Founded2010
- HeadquartersFountainville, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What The Cluster Headache Support Group does
The Cluster Headache Support Group (CHSG) is a 501(c)(3) non-profit organization founded in 2010 and domiciled in Kansas as a wholly-owned subsidiary of The Headache Pros, Inc. The organization is dedicated to providing patient-directed support, education, research, and advocacy for individuals affected by cluster headache and other trigeminal autonomic cephalalgias. It serves three primary segments: cluster headache patients (both episodic and chronic), their caregivers and family members, and healthcare providers seeking accurate clinical information. The core operational problem it addresses is the average 8-year diagnostic delay, frequent misdiagnosis, social isolation, and limited access to treatments such as home oxygen therapy.
CHSG's underlying technology is a content-and-community platform rather than a software product. The website (clusterheadachewarriors.org) hosts specialist-reviewed patient education guides covering treatments (oxygen, sumatriptan, verapamil, topiramate, neuromodulation, alternative therapies), a curated journal articles repository, a clinical trials database, downloadable physician-facing resources (e.g., Home Oxygen Prescribing Guide, KIP Scale), and patient stories. An international Facebook community provides 24/7 peer support, discussion forums, and crisis assistance. Revenue is generated through tax-deductible donations, branded merchandise and printed educational materials sold via an online store at $2-$10 unit pricing, and Amazon Smile affiliate referrals. The organization has no app, no disclosed API, and operates with all volunteer staff and no corporate offices.
The go-to-market motion is community-led, relying on organic social and content-driven awareness rather than paid acquisition. CHSG has built a substantial partnership ecosystem spanning clinical trial recruitment (Will Erwin Headache Research Center, Science 37, Michigan Headache and Neurological Institute, Clinical Trials of South Carolina, Autonomic Technologies), advocacy coalitions (American Headache Society, American Migraine Foundation, Alliance for Headache Disorders Advocacy, CHAMP), and international support networks (OUCH UK, PatientsLikeMe, Migraine Disease). Geographic reach is nominally global through the online community, though the physical mailing address is in Tucson, Arizona, and the parent entity is registered in Kansas.
The Cluster Headache Support Group firmographics
Firmographics- Name
- The Cluster Headache Support Group
- Legal name
- Cluster Headache Support Group, Inc.
- Website
- https://clusterheadachewarriors.org
- Company type
- Private
- Founded year
- 2010
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- The Cluster Headache Support Group is a 501(c)(3) non-profit founded in 2010 that provides patient education, peer support, advocacy, and clinical trial recruitment for cluster headache sufferers, caregivers, and healthcare providers through a website, international Facebook community, and partnership network.
- Ownership category
- akta.pro rank
The Cluster Headache Support Group industry classification
Industry- Product category
- Patient Advocacy and Support Services
- NAICS
- Other Individual and Family Services (624190), Individual and Family Services (6241)
- SIC
- Services-Social Services (8300), Services-Health Services (8000)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where The Cluster Headache Support Group is headquartered
LocationHeadquarters
- HQ city
- Fountainville
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
The Cluster Headache Support Group business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Operations, Marketing or Sales, Others
Revenue model
- Donations: Tax-deductible charitable donations from individuals supporting cluster headache research, support, and education. 100% of donations go toward improving lives of cluster headache sufferers.
- Merchandise Sales: Sale of branded merchandise including tumblers, ball caps, pens, keychains, flashlights, and hot/cold packs. Also includes printed educational materials like Cluster Alert Cards and Info Cards.
- Amazon Smile: Amazon donates a portion of sales to CHSG when customers shop through the organization's Amazon Smile referral link.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Unit Pricing | Pay-as-you-go | Branded merchandise items |
Go-to-market motion1 record
Distribution channels3 records
Marketing channels5 records
The Cluster Headache Support Group product offering
Product offeringCore offering
The Cluster Headache Support Group provides worldwide patient-directed support, education, research, and advocacy for individuals affected by cluster headaches and their caregivers. Its core deliverables are free online resources (patient education guides, journal articles, clinical trial listings, a headache specialist directory, patient stories, and crisis resources) and a paid branded merchandise storefront (the CHSG Store) that funds operations.
Product overview
The Cluster Headache Support Group operates as a non-profit patient education and support organization offering a comprehensive suite of resources for cluster headache sufferers. The core offerings include patient education guides covering basics, treatments (Sumatriptan, Oxygen therapy), disability rights, and coping strategies; a curated journal articles repository linking to peer-reviewed research; detailed treatment options information across abortives, preventives, bridging therapies, neuromodulation, and alternative therapies; downloadable patient resources including the Home Oxygen Prescribing Guide, KIP Scale, symptom tracking tools, and advocacy letter templates; clinical trials listings; community discussion forums; and patient story sharing. The organization also maintains an ancillary merchandise store for awareness items and printed materials. The organization does not operate as a technology product platform but rather as an informational and support resource.
Differentiator
Problem solved
Functional benefit
Products and services
- CHSG Store (branded merchandise) Paid merchandise storefront selling branded cluster headache awareness and support products (including t-shirts, hoodies, mugs, tote bags, phone grips, jewelry, notebooks, and similar items) that fund the organization's operations. Products are for individual supporters and the patient community.
- Community Discussion Forums (CHSG Community Facebook Group) Free international peer support community for cluster headache patients and their caregivers, hosted on Facebook, with membership exceeding 26,000. Provides discussion threads, peer advice, and shared experience among the cluster headache patient population.
- Cluster Headache Doctor Directory Online directory of clinicians and specialists experienced in treating cluster headache, used by patients and caregivers to locate knowledgeable providers.
- Clinical Trials Listing Resource listing clinical trial opportunities for cluster headache patients, enabling patients to identify and consider participation in research studies.
- Annual CHSG Patient Symposium Annual in-person symposium bringing together cluster headache patients, caregivers, clinicians, and researchers for education, networking, and community building.
Quantifiable outcome
- Emgality reduced weekly cluster headache attack frequency throughout a cluster period in phase 3 clinical trials
- +2 more outcomes
Companies that use The Cluster Headache Support Group
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles3 records
The Cluster Headache Support Group technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
The Cluster Headache Support Group partnerships and signals
Strategic signalPartnerships
Twelve partnerships are on record, tiered core and minor.
- Will Erwin Headache Research CentercorePartnered for cluster headache patient enrollment in clinical trials. CHSG assists in recruiting participants for research studies on cluster headache and trigeminal neuralgia.
- Science 37corePartnered for cluster headache patient enrollment in clinical trials, utilizing decentralized trial capabilities.
- Michigan Headache and Neurological InstitutecorePartnered for cluster headache patient enrollment in clinical trials for novel treatment strategies.
- Clinical Trials of South CarolinacorePartnered for cluster headache patient enrollment in clinical trials.
- Autonomic TechnologiesminorPartnered for cluster headache patient enrollment in clinical trials related to neurostimulation treatments.
- American Headache SocietycoreCollaborating to eliminate bureaucratic barriers preventing Medicare coverage of home oxygen for cluster headache patients and to drive policy changes.
- American Migraine FoundationcoreCollaborating on advocacy efforts to change Medicare policy on oxygen coverage for cluster headache patients.
- Alliance for Headache Disorders AdvocacycoreWorking together to facilitate policy change and eliminate barriers to safe, effective treatment for cluster headache patients.
- CHAMP Coalition for Headache and Migraine PatientscoreCoalition partner for headache and migraine patient advocacy and support.
- Patients Like MeminorPartner providing patient community platform for sharing health data and connecting with other patients.
- OUCH (UK)minorUK-based organization providing international crisis helpline support for cluster headache patients; 24/7 messaging service with calls returned 10am-2pm.
- Migraine DiseaseminorPartner organization for migraine and headache disorder education and advocacy.
Scale indicators3 records
Recent moves6 records
Expansion highlights6 records
The Cluster Headache Support Group competitors and assessment
Company assessmentEmerging players
- PatientsLikeMe: Online patient community and health-data platform partnering with CHSG; comparable patient community and peer-support functionality but broader disease coverage and technology-enabled data-sharing capabilities.
Direct peers
- American Migraine Foundation: 501(c)(3) patient advocacy and education organization for migraine sufferers; closely comparable non-profit disease-support model serving a related headache disorder population, with overlapping advocacy and research partnerships.
- Migraine Research Foundation: Non-profit funding research and providing patient education for migraine; comparable disease-specific research-support and patient-education model in the broader headache disorder space.
- National Headache Foundation: Long-established patient education and advocacy organization for headache disorders including cluster headache; comparable non-profit mission, patient resources, and physician-reviewed content approach.
- Alliance for Headache Disorders Advocacy: Non-profit advocacy coalition focused on policy change for headache disorder patients; directly comparable patient-advocacy mission and explicitly a CHSG partner in Medicare oxygen coverage work.
- OUCH UK: UK-based cluster headache charity providing support, helpline, and education; the most direct international peer given shared disease focus, similar non-profit structure, and formal CHSG partnership for crisis support.
- CHAMP Coalition for Headache and Migraine Patients: Coalition of headache and migraine patient organizations including CHSG; comparable advocacy-focused non-profit model coordinating policy and awareness efforts across related headache conditions.
Broad incumbents
- American Chronic Pain Association: Established non-profit serving people with chronic pain conditions including headache disorders; broader scope than CHSG but overlapping patient-education, peer-support, and advocacy functions.
- International Headache Society: Global professional society for headache specialists; broader clinical/research focus than CHSG but addresses the same patient population through physician education, guidelines, and research that CHSG translates for lay audiences.
Others
- Will Erwin Headache Research Center: Research center focused on cluster headache and trigeminal neuralgia clinical trials; CHSG is a recruitment partner, making it a key ecosystem participant rather than direct competitor, with overlapping patient-recruitment activity.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks6 records
Key highlights6 records
Customer concentration
The Cluster Headache Support Group social profiles
Digital presenceThe Cluster Headache Support Group financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Cluster Headache Support Group leadership team
Management profileNumber of profiles
The Cluster Headache Support Group funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
The Cluster Headache Support Group 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 The Cluster Headache Support Group
What does The Cluster Headache Support Group do?
The Cluster Headache Support Group provides worldwide patient-directed support, education, research, and advocacy for individuals affected by cluster headaches and their caregivers. Its core deliverables are free online resources (patient education guides, journal articles, clinical trial listings, a headache specialist directory, patient stories, and crisis resources) and a paid branded merchandise storefront (the CHSG Store) that funds operations.
Is The Cluster Headache Support Group a public or private company?
The Cluster Headache Support Group is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The Cluster Headache Support Group founded?
The Cluster Headache Support Group was founded in 2010. It employs 11 to 50 people.
Where is The Cluster Headache Support Group based?
The Cluster Headache Support Group is headquartered in Fountainville, United States, in the North America region.
How does The Cluster Headache Support Group make money?
Three revenue lines are on record. Donations are the primary driver. The others are merchandise Sales and amazon Smile.
Who are The Cluster Headache Support Group's main competitors?
PatientsLikeMe is listed as an emerging player. Direct peers are American Migraine Foundation, Migraine Research Foundation, National Headache Foundation, Alliance for Headache Disorders Advocacy, OUCH UK and CHAMP Coalition for Headache and Migraine Patients. Broad incumbents are American Chronic Pain Association and International Headache Society. Will Erwin Headache Research Center is listed as an others.
Does The Cluster Headache Support Group have an API?
No public API is recorded for The Cluster Headache Support Group.
What industry is The Cluster Headache Support Group in?
The Cluster Headache Support Group's product category is Patient Advocacy and Support Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 624190 and its SIC code is 8300.