PATIENT SUPPORT GROUPS AROUND THE WORLD
YOU ARE NOT ALONE!
Cluster headache affects roughly 1 in 1,000 people. That feels impossibly rare at 3 AM when no one around you understands. But depending on where you are in the world there are local and international support groups.
On this page, we’re making a list of all support groups we are aware of. If you know of others, please email us at info@myclusters.nl and we will add the group to this link. Please send us links to facebook groups, other patient support and advocacy groups.
If you are in an emergency situation, please call your closest emergency center. If you are considering self harm or have other harmful thoughts, please call your closest helpline by using one of the links below.
International
Reddit - Sub reddits are like channels. On reddit you can post anonymously, and the communities answer your posts, comments.
Discord - Discord is like a big powerful whatsapp group, where you can also chat with people live, talk to them in voice channels, and find specific links and information.
United States
Clusterbusters — Largest US CH advocacy group. Funds psilocybin research at Yale, annual conference (October 2026, Chicago), active forums, comprehensive oxygen guide clusterbusters.org
Cluster Headache Support Group (CHSG) — Serves ~10,000 patients and caregivers. Most active on Facebook clusterheadachewarriors.org
Netherlands
Beat the Beast — Dutch CH patient organisation and research fundraising foundation beatthebeast.nl
Hoofdpijnnet — Dutch headache patient association, very active, covers CH extensively hoofdpijnnet.nl
Tacsweb — Patient information platform specifically for trigeminal autonomic cephalalgias (cluster headache, paroxysmal hemicrania, SUNCT/SUNA) tacsweb.nl
United Kingdom
OUCH UK (Organisation for the Understanding of Cluster Headache) — UK's dedicated CH charity. 3,000+ members. Helpline, forum, annual conference, downloadable info packs, ER info cards. ouchuk.org
Germany
DMKG (Deutsche Migräne- und Kopfschmerzgesellschaft) — Professional headache society with a patient section including specialist finder, headache diary app, and multilingual brochures dmkg.de/patienten
Austria
Cluster Kopfschmerzen Verein Österreich — Austrian CH patient organisation. Peer support meetings, doctor registry, psychosocial counselling clusterkopfschmerzen.at
Belgium
OUCH Belgium — Belgian CH organisation (bilingual FR/EN). Treatment guidance and oxygen equipment information ouch-belgium.be
France
AFCAVF (Association Française Contre l'Algie Vasculaire de la Face) — France's dedicated CH patient association. Member of Alliance Maladies Rares. Patient forum at forum.afcavf.org afcavf.org
Italy
O.U.C.H. Italia / GrappoloAiuto — Italian CH patient organisation. Forum, treatment information, regional directories grappolaiuto.it
Portugal
MiGRA Portugal — Portuguese headache patient association. EMHA member. Covers CH migraportugal.pt
Norway
Hodepine Norge — Norwegian headache patient organisation. Includes a "Chat with doctor" service hodepinenorge.no
Ireland
Migraine Ireland (legally Migraine Association of Ireland) — Covers CH alongside migraine. No dedicated Irish CH group exists; Irish patients often connect through OUCH UK migraine.ie
Canada
Migraine Canada — Covers CH with specialist directories. No dedicated Canadian CH group exists migrainecanada.org
Brazil
ABRACES — Brazilian CH patient organisation, led by neurologist Dr. Mario Peres abraces.com.br
Australia
Migraine & Headache Australia (division of the Brain Foundation) — National organisation with dedicated CH page headacheaustralia.org.au
Cluster Headaches Australia — Patient-run CH information and community site clusterheadaches.com.au
Don't see your country? Email us at info@myclusters.nl — we'll research it. If you run a cluster headache group anywhere in the world, please reach out. We want this directory to be as complete as possible.
