Starter-Kit for Patients Suffering from Hemophilia A Project Initiated by the German Hemophilia Assistant Committee

摘要

Hemophilia is a hereditary bleeding disorder, which cannot be cured until today. However, supported by current treatment alternatives, most patients are able to live normal lives keeping a few rules in mind.Parents of a son recently diagnosed with hemophilia, or hemophilia patients diagnosed later in life often present with insecurity and missing knowledge about hemophilia and the resulting consequences for their lives.The starter-kit wants to give a concise orientation for people who are newly diagnosed or for their relatives.The idea of the starter-kit was born during a meeting of the European hemophilia assistants. The German hemophilia assistant group adopted this important theme and worked out relevant points for parents with a boy recently diagnosed with hemophilia.