The patient's perspective of Fabry disease – a report from the German Fabry Patient Support Group

Excerpt

The Morbus Fabry Selbsthilfegruppe e.V. (MFSH) is a German-based support group for patients with Fabry disease. The aims of the MFSH are manifold and include raising awareness of Fabry disease within the medical profession and in general, offering support to patients and the families of those affected by Fabry disease, and campaigning for prompt diagnosis and widespread treatment for all affected. The MFSH, together with other Fabry patient support groups within Europe, is actively involved in disseminating information to patients with Fabry disease through newsletters, information booklets and conferences. Between 2002 and 2005, patient support groups successfully organized four International Fabry Patient Meetings, and the number of registered members continues to increase. They operate a much-needed and well-utilized patient support network and are campaigning for the screening and treatment of Fabry disease to become standard practice in all appropriate medical settings.