Description
The present project has an educational focus aimed at raising the society-wide awareness of rare diseases including the family members of children and young adults with rare diseases; to provide guidance and follow-up care for the whole family through this whole process and to increase the awareness of potential and/or persons already involved in care and support services. The goal of the project is to raise awareness of the general public of rare diseases in society; and support professionals in gaining new knowledge on this issue. The project is divided into five sections which together will form the whole campaign. These sections cover a conference, an awareness campaign, training of health workers, training of support workers and analysis of the situation and proposals for amendments on disclosure procedure after the diagnosis of serious illness due to rare disease in children or young adults. The main target group is children and young adults suffering from rare diseases, parents caring for family members with a rare disease and medical workers providing care to patients with rare diseases.
Summary of project results
The aim of the sub-project was to improve of expert and broad public about so called rare diseases and to improve the situation of families, who must deal with the diagnosis saying that their child suffers from a rare disease. The aim of the sub-project was fulfilled and the activities helped to develop the services provided by The Centre of Guidance in Czech Republic. The outputs of the sub-projects were: - Two National conferences “The rare diseases in society” - Educational seminars for parents of kids with a rare disease - Educational seminars for medical workers - Exhibition of photos of patients with a rare disease - Creation of therapeutic CD for parents of kids with a rare disease - Creation of analytic and strategic documents concerning the area of rare diseases - Foundation and operation of the Centre of Guidance - PR activities about the sub-project and the topic of rare diseases in society
Summary of bilateral results