Rare family days: a family empowerment programme

Having a seriously ill child is intrusive for the entire family. Still, knowledge about how to manage family life for these families is limited, especially when the diagnosis is rare. To offer tools to cope with their situation, Rare Disorders Denmark (RDD) developed Rare Family Days (RFD). RFD is an empowerment programme targeted families with children carrying a rare disease. The programme purpose is to empower families in their everyday life by offering an opportunity to create supportive networks, a forum for exchange of experience-based knowledge, knowledge of social and legal affairs, knowledge of psychological aspects of family life and tools for conflict management and goal setting. RFD consists of: a weekend course for the entire family a one-day follow-up for parents access for parents to a closed internet forum with information, links and an opportunity to keep in contact The programme form alternates between network-creating activities for the entire family, activities for children, activities for parents with professional presentations, presentations and discussions by volunteering patient representatives who engage throughout the programme as mentors for the families, group discussions and problem solving.