ABSTRACT
This chapter focuses on data collected during two years of anthropological fieldwork conducted within the framework of the project ‘Socio-cultural dimensions of rare diseases on the example of Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency (LCHAD) deficiency: a comparative study of Poland and Finland’. It discusses the internet support group appears as a helpful tool in advocacy and knowledge on understanding how to best care for a child. LCHAD is a rare metabolic disorder, and the worldwide birth prevalence is estimated at one in 250,000. The body of a patient who has LCHAD cannot produce enzymes, which are key in the process of fatty acids oxidation and this is first seen in early infancy or childhood. Since the only known treatment that can improve quality of life of a person with a LCHAD is a rigorous diet, a dietician’s support becomes essential.
