The role of patients' organizations

Most patients find difficulties coming to terms with being told that they have an incurable disease, even if it is not life-threatening. Doctors rarely have the time or the experience to answer all the questions that may arise in the patient's mind. Self-help groups can provide a range of services to help the patient. These services include initial support at the time of diagnosis, continued support, including family help, provision of information, social activities and support for research into the treatment and prevention of the disease in question.