Main details of 157 patients and consumers groups.

*federations or coalitions (comprising many organizations).**for single organizations the number of sections (local units) is reported if available on the website, otherwise the number of volunteers/individuals is given.∧organizations not included in other categories: e.g. growth hormone deficiency, psoriasis, inflammatory bowel disease, osteoporosis, prevention of blindness.Description of patient and consumer groups included in the survey: headquarter, main area of activities (going from the larger areas – i.e. regions – to the smaller ones – i.e. single cities or municipality), age (mean and range), number of members (mean and range) classified as: number of groups (for coalitions or federations), number of sections or local units (for single organizations), number of individuals (for single organizations); disease of interest.