Background: There have been no reports of the world views, values and priorities of families of children with Velo-cardio-facial-syndrome in Norway, despite the fact that family beliefs are considered to be among the most important factors affecting the coping, resilience and adaptation of families to the disability.Methods: Transcripts from two focus groups and written interviews (questionnaire) involving 16 families as key informants 32 parents of children with Velo-cardio-facial-syndrome were analyzed using qualitative methods. These families of children with Velo-cardio-facial syndrome had been invited by Frambu Resource Centre for Rare Disorders to attend a family one week course on Velo-cardio-facial-syndrome and it is during this period of one week that the research study was carried out.Results: The themes indicated that raising a child with severe disabilities such as Velo-cardio-facial-syndrome can be a challenging and life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve redefinition of the child’s situation and different ways of thinking about their child’s disability, their parenting role, and the role of the family as a whole. Although parents may grapple with lost dreams, over time positive adaptations may occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by the child to family members and the society as a whole. Parents’ experiences indicate the importance of hope and seeing the possibilities that lie ahead of them.Conclusions: The information of this study may be used to provide families with an advance understanding of the changes in beliefs that they might undergo which might lead to positive outcomes and family adaptation and may assist service providers in providing individualized and family-centered services and support to families.