National Alliance of People with Rare Diseases – 1

The 1st National Conference of People with Rare Diseases will take place on 14 April 2007 in Sofia. The purpose of this event is to establish a National Alliance of People with Rare Diseases. In the last years several European developments have started to improve the situation for people with a rare disease. In most of the European countries there are patient associations that strengthen the position and influence of the people with rare diseases and disabled people in society, organise contacts with fellow-sufferers and strengthen the information on diagnosis, care, treatment and living with the disease. The importance of forming the National Alliance of People with Rare Diseases is enormous. This Alliance will serve as a bridge between the people with rare diseases and the public health care systems by advocating for the basic human right to receive contemporary and equal medical care. The event is organized by our Information Centre in cooperation with the National Association of Gaucher Patients. Detailed information about this event will be published soon.