Von Recklinghausen Gesellschaft: the German lay organization for patients with neurofibromatosis

The German lay organization of patients with neurofibromatosis was founded in Hamburg, Germany in 1987. The organization is named after the pathologist Friedrich Daniel von Recklinghausen, the "Von-Recklinghausen-Gesellschaft" (VRG). The aim of this non-profit making organization is to popularize the knowledge about the diseases that are presently termed "neurofibromatosis" in the medical area. A second aim is to get patients and their relatives together in order to improve their social integration. Starting with a group of a few patients and medical professionals, the VRG presently has more than 1,300 members. The neurofibromatosis ambulance in Hamburg, established in 1991, supports about 700 patients per year. Altogether more than 4,000 neurofibromatosis outpatients have been investigated by an interdisciplinary approach since the establishment of the organization..