President – Dr. Harald Müller
The organization was founded in 2001 by sufferers from cluster headache syndrom (CHS) and their relatives. It is a non-profit, caritative, independent organization which is solely run by volunteers.
They primary goal is to give information and to support CHS sufferers as well as their relatives in all aspects (e.g. therapeutical methods, psychological problems, problems in working life etc.) of the disability, which is non-curable at the present time.
They want to increase awareness on CHS as a severe disabling and devastating condition in the public, politics, medical professionals, and media.
They campaign for a better access to care and for standardised effective adequate therapeutical treatment of CHS patients.
They foster research in order to find a treatment to finally cure cluster headache.
They count with and exchange forum,
- Bundesarbeitsgemeinschaft der Selbsthilfegruppen (BAG) – A national German umbrella organization for patient´s support group
- Allianz chronischer seltener Erkrankungen (ACHSE e.V.) – A national German umbrella organization for rare diseases
- Deutscher Behindertenrat – A national German umbrella organization for handicapped people
- Eurordis – Rare disease Europe – A European umbrella organization for people with rare diseases
- European Headache Alliance
Information on Cluster Headche Syndrome (CHS) in over 25 languages: