Information for caregivers
Families and relatives of patients with disease are faced with many problems and questions. The information leaflet about the disease originated from various contacts with the families. We included frequently sought information. Physicians from then reference center are happy to support and to answer individual questions. We are organizing each year together with the family support foundation CJK Initiative- support from families to families e.V.- family meetings in order to inform about the disease and new developments and provide a platform to talk to others.