Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents’ experience of caring for a child with a rare disease is limited. Fifteen parents of children with rare diseases participated in semi structured interviews. Interpretive thematic analysis reveales that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family. To read further more about the study and the results of it check here.
Bulgarian Huntington Association