Clusterbusters
Clusterbusters is a 501(c)(3) non-profit founded in 2002 and the largest cluster headache patient advocacy organization in the world, serving cluster headache patients, caregivers, and healthcare providers through education, research facilitation, community support, and policy advocacy.
- Company typePrivate
- Founded2002
- HeadquartersLombard, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Clusterbusters does
Clusterbusters, Inc. is a 501(c)(3) non-profit research and educational organization founded in 2002 by Bob Wold and headquartered in Lombard, Illinois. It is the largest cluster headache patient advocacy organization in the world, serving individuals suffering from cluster headaches ('clusterheads'), their caregivers and family members, and the healthcare providers who treat them. The organization runs a comprehensive resource ecosystem including an online patient forum with 39.4k posts, virtual and in-person support groups, a peer-to-peer ClusterBuddies program, an annual U.S. patient conference (now in its 21st year), a video resource library, suicide prevention resources, and the CHAT-III algorithm-based diagnostic tool.
The organization's core activities span patient education, research facilitation, and policy advocacy. Clusterbusters pioneered research into psychedelic treatments (psilocybin, LSD, Bromo-LSD) for cluster headaches, maintaining longstanding research partnerships with Harvard Medical School, Yale School of Medicine, Hannover Medical School, McGill University, and the University of West Georgia. It operates a patient registry that enables clinical trial recruitment, notably contributing to Eli Lilly's CGRP antibody trials that led to FDA approval of Emgality for episodic cluster headache. The organization also advocates for treatment access, including a two-decade effort that culminated in CMS coverage of home oxygen therapy for cluster headache patients in 2021.
Clusterbusters generates no commercial revenue and is funded entirely by tax-deductible donations from individuals, philanthropic supporters, and a small set of pharmaceutical donors including Eli Lilly and Amneal. The organization employs 11–50 staff and operates with a lean team supplemented by a credentialed Medical Advisory Board drawn from leading academic headache centers. Its go-to-market is community-led, relying on patient word-of-mouth, organic social media, forums, and event-driven engagement rather than any commercial sales motion. The organization does not sell products or services; all resources, education, and advocacy are provided free of charge to cluster headache patients and their families.
Clusterbusters firmographics
Firmographics- Name
- Clusterbusters
- Legal name
- Clusterbusters, Inc.
- Website
- https://clusterbusters.org
- Company type
- Private
- Founded year
- 2002
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Clusterbusters is a 501(c)(3) non-profit founded in 2002 and the largest cluster headache patient advocacy organization in the world, serving cluster headache patients, caregivers, and healthcare providers through education, research facilitation, community support, and policy advocacy.
- Ownership category
- akta.pro rank
Clusterbusters industry classification
Industry- Product category
- Patient Advocacy 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
- Behavioral Health Crisis Services Management (988/Hotlines/Mobile Crisis Coordination) (HLAEAHAK)
- akta.pro secondary industry
- Behavioral Health & Substance Use Remote Monitoring (HLACAFAD)
Keywords
Where Clusterbusters is headquartered
LocationHeadquarters
- HQ city
- Lombard
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Clusterbusters business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Charitable Contributions: As an IRS-approved 501(c)(3) non-profit organization, Clusterbusters relies entirely on donations from individuals, supporters, and pharmaceutical companies (Eli Lilly, Amneal) to fund operations, research, education, advocacy programs, and patient support activities. Donations are tax-deductible and can be made via PayPal, credit/debit card, Zelle, check, or iGive online shopping contributions.
Go-to-market motion2 records
Distribution channels5 records
Marketing channels9 records
Clusterbusters product offering
Product offeringCore offering
Clusterbusters provides cluster headache patients with educational resources, peer support, treatment guidance (including high-flow oxygen therapy and psychedelic treatment research summaries), and clinical trial connections through patient forums, virtual and in-person support groups, and an annual patient conference. The organization also maintains the CHAT-III diagnostic tool, a research studies platform, a patient registry for clinical trial recruitment, and a suicide prevention resource library, and conducts advocacy to expand treatment access (e.g., CMS oxygen coverage).
Product overview
Clusterbusters is a 501(c)(3) nonprofit patient advocacy organization founded in 2002, offering a suite of resources for cluster headache patients. The core offerings include patient forums for community support, a research studies platform connecting patients with clinical trials, the CHAT-III diagnostic tool for headache assessment, and an annual patient conference. Supporting services include virtual support groups and the ClusterBuddies peer-to-peer program, treatment resources covering preventive, abortive, and alternative approaches, a high-flow oxygen therapy guide, a video resource library, and suicide prevention resources. The organization primarily focuses on education, advocacy, and research support rather than a unified technology product.
Differentiator
Problem solved
Functional benefit
Products and services
- Patient Forums Online forums providing a secure community space for cluster headache patients to discuss medications, side effects, alternative treatments, and coping strategies. Includes topic categories for general discussion, advocacy, research news, and migraine-related information.
- Research Studies Platform A platform connecting patients with clinical trials and research studies for cluster headaches, including current and closed studies on topics such as psilocybin, oxygen therapy, genetics, and preventive treatments. Features a patient registry for enrollment.
- CHAT-III Diagnostic Tool The Computerized Headache Assessment Tool (CHAT-III) is an algorithm-based online diagnostic tool developed to help recognize primary headache diseases including migraine, tension-type headache, and cluster headache. Refined with Clusterbusters' assistance for accurate cluster headache recognition.
- Annual Patient Conference Annual U.S. patient conference bringing together cluster headache patients, families, and healthcare professionals for support, education, and community. Features emerging treatments, personal testimonies, group support sessions, and CME opportunities for medical professionals.
- Virtual Support Groups Virtual support groups including patient support groups (meeting monthly on various days/times) and care partner support groups. Includes a peer-to-peer ClusterBuddies program connecting support-seekers with experienced clusterhead volunteers.
- Treatment Options Resource Comprehensive information on cluster headache treatments organized by category: preventive treatments, abortive treatments, and alternative treatments including oxygen therapy, psilocybin, and other tryptamine-based approaches.
- High-Flow Oxygen Therapy Guide Detailed resource on oxygen therapy for cluster headaches covering equipment (tanks, regulators, masks), flow rates, breathing techniques, prescriptions, insurance navigation, and travel considerations.
- Video Resource Library Video gallery featuring educational content including oxygen usage demonstrations, psilocybin treatment discussions, patient testimonies, medical professional presentations, and advocacy event recordings.
- Suicide Prevention Resources Comprehensive suicide prevention and crisis intervention resources specifically tailored for cluster headache patients, including international hotlines, coping strategies, and support for those experiencing suicidal thoughts during attacks.
Quantifiable outcome
- 69% of cluster headache patients experience suicidal thoughts during attacks; 20x national average suicide attempts
- +3 more outcomes
Companies that use Clusterbusters
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles3 records
Clusterbusters technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Clusterbusters partnerships and signals
Strategic signalPartnerships
20 partnerships are on record, tiered core and minor.
- Harvard Medical SchoolcoreClusterbusters worked with Harvard in the early 2000s on psychedelic research, which showed how useful psilocybin compounds could be in decreasing not only attack frequency but the intensity of pain, allowing chronic patients to become episodic and get up to two years or more of pain-free time.
- Yale School of MedicinecoreClusterbusters has worked with Yale to continue research into psilocybin for cluster headache treatment. Dr. Emmanuelle Schindler at Yale executed the first controlled trials investigating psilocybin effects in cluster headache. Dr. Christopher Gottschalk continues the psilocybin research project started by Andrew Sewell.
- Hannover Medical School (Germany)coreClusterbusters collaborated with Hannover Medical School in Germany and Professor Torsten Passie to study LSD, psilocybin, and Bromo-LSD (BOL-148) for cluster headache treatment, including research into non-hallucinogenic compounds.
- McGill UniversityminorClusterbusters has collaborated with McGill University on cluster headache research projects.
- University of West GeorgiaminorWith Dr. Larry Schor at University of West Georgia, Clusterbusters completed the largest survey ever conducted to establish the severity and burden of cluster headaches (CHQ).
- Veterans Administration (VA)minorClusterbusters has branched out to include work with the VA on various impacts of cluster headaches, including the Oxygen Interview Study at VA Connecticut Healthcare System.
- Children's HospitalminorClusterbusters has collaborated with Children's Hospital on research into various impacts of cluster headaches.
- Alliance for Headache Disorders Advocacy (AHDA)coreClusterbusters is a proud member organization of AHDA. An alliance of headache organizations that advocate for all people suffering from headache disorders with a united voice. Annual trip to Washington DC to educate and advocate for increased research funding and improved treatment.
- Coalition for Headache And Migraine Patients (CHAMP)coreCHAMP brings many headache and migraine organizations together for a common goal of improving lives. Clusterbusters is a proud partner, participating in events like annual Retreat Migraine and multiple headache-related conferences.
- Headache & Migraine Policy Forum (HMPF)coreHMPF is dedicated to advancing public policy and practices to improve treatment access. Clusterbusters has partnered with HMPF which plays a critical role in annual Headache on the Hill event.
- American Headache Society (AHS)coreClusterbusters works with AHS, with Executive Director Bob Wold presenting at AHS conferences and events.
- American Migraine FoundationcoreClusterbusters joined the American Migraine Foundation to fight debilitating head pain together as part of ongoing commitment to providing meaningful information, resources and support.
- National Organization for Rare Disorders (NORD)coreClusterbusters is a proud member organization with NORD as they partner to overcome challenges of rare disorder representation and collective voice.
- National Headache Foundation (NHF)minorClusterbusters is affiliated with NHF as part of their network of headache and migraine organizations.
- Headache Cooperative of New England (HCNE)minorClusterbusters works with HCNE, including participation in their conferences where patients have presented alongside medical professionals.
- U.S. Pain FoundationminorClusterbusters is affiliated with U.S. Pain Foundation as part of the broader pain advocacy community.
- Migraine World SummitminorClusterbusters participates in Migraine World Summit events and collaborations.
- Organisation for the Understanding Cluster Headache in the UK (OUCH-UK)minorClusterbusters is connected with OUCH-UK, the UK-based organization for understanding cluster headache.
- Lobe Sciences Ltd.minorLobe Sciences Ltd. and Cynaptec Pharmaceuticals will present a new therapeutic approach for treating chronic cluster headaches at Clusterbusters 2025 conference.
- Cynaptec Pharmaceuticals, Inc.minorCynaptec Pharmaceuticals, Inc. will present a new therapeutic approach for treating chronic cluster headaches at Clusterbusters 2025 conference alongside Lobe Sciences Ltd.
Scale indicators4 records
Recent moves6 records
Expansion highlights6 records
Clusterbusters competitors and assessment
Company assessmentDirect peers
- Coalition for Headache And Migraine Patients (CHAMP): CHAMP is a coalition of headache and migraine patient organizations working collectively on advocacy and education. Clusterbusters is a proud partner of CHAMP and both organizations co-host events like Retreat Migraine, making CHAMP a direct peer in coalition-based headache patient advocacy.
- American Migraine Foundation: The American Migraine Foundation is a patient-focused nonprofit supporting migraine research and education. Clusterbusters is an active partner of the AMF, and AMF runs a parallel playbook of patient education, research facilitation, and physician resources — making it a direct peer in the headache advocacy space.
- Headache & Migraine Policy Forum (HMPF): HMPF is a dedicated policy and advocacy organization focused on advancing public policy for headache treatment access. Clusterbusters partners with HMPF on Headache on the Hill, making it a direct peer in headache-specific policy advocacy.
- Migraine Research Foundation: The Migraine Research Foundation is a nonprofit that funds migraine and headache research and provides patient education. It shares Clusterbusters' focus on research grants, education, and patient resources within the headache disorder space.
- National Headache Foundation: The National Headache Foundation is a long-established nonprofit dedicated to headache education, research funding, and patient support. It is an affiliate of Clusterbusters and addresses a broader headache population with similar advocacy, education, and research grantmaking activities — the closest direct peer in mission and structure.
- Alliance for Headache Disorders Advocacy (AHDA): AHDA is an alliance of headache organizations that advocates collectively for increased research funding and improved treatment access, including the annual Headache on the Hill event. Clusterbusters is a member organization, making AHDA a direct peer in federal policy advocacy for headache disorders.
Broad incumbents
- National Organization for Rare Disorders (NORD): NORD is a broad incumbent umbrella for rare disease patient organizations, providing advocacy, research funding, and coalition support. Clusterbusters is a member organization with NORD, and NORD plays a similar role at a much larger scale across thousands of rare conditions.
- U.S. Pain Foundation: The U.S. Pain Foundation is a broader pain advocacy nonprofit providing education, support, and policy advocacy across multiple pain conditions including headache. Clusterbusters is affiliated with the U.S. Pain Foundation, making it a broad incumbent peer in pain patient advocacy.
- American Headache Society: The American Headache Society is the professional society for clinicians treating headache disorders. Clusterbusters partners with AHS and presents at its conferences, making AHS a broad incumbent peer that bridges the patient and clinician sides of headache care.
Regional players
- OUCH UK (Organisation for the Understanding of Cluster Headache): OUCH UK is the UK-based counterpart cluster headache patient organization focused on the same rare condition. Clusterbusters is connected with OUCH-UK as an international peer, and OUCH-UK provides parallel advocacy, support, and education in the UK geography.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
Clusterbusters social profiles
Digital presenceClusterbusters financial estimates
Financial estimateRevenue estimate
Valuation estimate
Clusterbusters leadership team
Management profileNumber of profiles
Profiles12 records
Clusterbusters funding detail
Funding detailFunding overview
Funding rounds
Investors
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Clusterbusters M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about Clusterbusters
What does Clusterbusters do?
Clusterbusters provides cluster headache patients with educational resources, peer support, treatment guidance (including high-flow oxygen therapy and psychedelic treatment research summaries), and clinical trial connections through patient forums, virtual and in-person support groups, and an annual patient conference. The organization also maintains the CHAT-III diagnostic tool, a research studies platform, a patient registry for clinical trial recruitment, and a suicide prevention resource library, and conducts advocacy to expand treatment access (e.g., CMS oxygen coverage).
Is Clusterbusters a public or private company?
Clusterbusters is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Clusterbusters founded?
Clusterbusters was founded in 2002. It employs 11 to 50 people.
Where is Clusterbusters based?
Clusterbusters is headquartered in Lombard, United States, in the North America region.
How does Clusterbusters make money?
One revenue line is on record: donations and Charitable Contributions.
Who are Clusterbusters's main competitors?
Direct peers on record are Coalition for Headache And Migraine Patients (CHAMP), American Migraine Foundation, Headache & Migraine Policy Forum (HMPF), Migraine Research Foundation, National Headache Foundation and Alliance for Headache Disorders Advocacy (AHDA). Broad incumbents are National Organization for Rare Disorders (NORD), U.S. Pain Foundation and American Headache Society. OUCH UK (Organisation for the Understanding of Cluster Headache) is listed as a regional player.
Does Clusterbusters have an API?
No public API is recorded for Clusterbusters.
What industry is Clusterbusters in?
Clusterbusters's product category is Patient Advocacy Services. Its primary akta.pro industry code is HLAEAHAK, Behavioral Health Crisis Services Management (988/Hotlines/Mobile Crisis Coordination), with a secondary code of HLACAFAD, Behavioral Health & Substance Use Remote Monitoring. Its NAICS code is 624190 and its SIC code is 8300.