Working visit to rare diseases Agrenska Center

As Workpackage leader (Specialized Social Services) - and representative of the Community Action Eurordis EU and Member States for rare diseases, I participated in a working visit to rare diseases Agrenska Center in Sweden, together with my colleague Raquel Castro project manager.Agrenska offers programs for children, adolescents and adults with disabilities caused by rare diseases, their families and professionals involved in disease management. Agrenska is a meeting place, training and creativity, a blend of skills and knowledge, and the purpose of the center is to contribute to improving the quality of life of beneficiaries encouraging them to become more independent.
Components:
• National Competence Centre for Rare Diseases
• Program for families
• Program for adults
• Respiro Centre
• Counseling
• Training for professionals
• Agrenska Academy
 
In 2005 Agrenska launched a program for adults with rare diseases, since then organizing groups with the same diagnosis. The purpose of these groups is to put the spotlight on people who are in a similar situation, to be informed and trained to form support groups and share experiences.
During these groups, participants are enrolled in a training program on various aspects of their disease. Discussions and presentations are focused on the expressed needs of patients. Agrenska provides the latest knowledge on medical, psychosocial and educational issues as well as on legislation and social support needed by families in this situation. Participants also have time to discuss their situation and needs with professionals and each other, sharing their experiences, fears and hopes.
 

 

 

 

Data: 
Monday, August 20, 2012