Bundesverband der Clusterkopfschmerz

Bundesverband der Clusterkopfschmerz Selbsthilfe Gruppen CSG e.V.

 Dr. H.Müller 001

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,

They have cooperations and work with:
  • 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

 

Examples of good practices:
1. Cluster headache is a very difficult desease  to explain , even to familiar surroundings or physicians. The situation is worse if a patient is not able to speak the common language in the country he lives in. They have a lot of migrants in Germany, who are not able to speak the language properly. It is very difficult for them to communicate if they suffer from cluster headache. This is why they translated the information leaflets into 23 languages.
2. It´s difficult to adress young people who suffer from cluster headache. This is why one of their members composed a “clusterheadache-rap”, which describes the feelings and problems of a cluster headache sufferer
3.  Cluster headache is a rare condition and often not known even by physicians. To make sure that potential cluster headache sufferers get quick and reliable diagnosis and a correct treatment, they  have good cooperation with (meanwhile 10)  “cluster headache competence centers”

Information on Cluster Headche Syndrome (CHS) in over 25 languages:

 

Contact Info:

Bundesverband der Clusterkopfschmerz

Bundesverband der Clusterkopfschmerz Selbsthilfegruppen - CSG e.V. Clemensstraße 37 D-52525 Waldfeucht

We and our partners use cookies, to collect browsing data to give you the best online experience and to personalize the content, play multimedia content, interact with social networks and perform browsing analytics. If you continue browsing we understand you accept the use of such technology. For more information visit our cookies policy Find out more

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close