Just because a disease affects a small number of people, rare diseases are not irrelevant or less important than diseases that affect millions. The United Nations vision on the Sustainable Development Goals is a world in which no one is left behind, including people with a rare condition.
Still, eight out of ten patients (and their carers) with a rare condition in Europe state they have difficulties performing daily tasks such as household chores and preparing meals. Equipollent participation in society requires social change.
The ICF nine chapters of the domain activities and participation describe the execution of a task or action by an individual, and the involvement in the life situation.
Codes start with the letter d, followed by the number of the chapter. An example 6= domestic life, d 630= preparing meals; d 6300= preparing simple meals.