There are different ways to organize a self-help group.
An association can be a registered society having legal capacity. The roles, functions and duties of the members, purpose of association, mode of decision and vote are determined by law.
A working group mostly has the same motives and aims like registered associations but doesn´t want to register as an association.
In some countries (e.g. in Austria) there are umbrella associations who coordinate cooperation of the national self-help groups.
In every case it is necessary to get information whether there are already other self-help groups for the same disease in your country.
The following issues should be discussed and the outcome should be recorded in writing.