Rare disease study seeks to understand family coping

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: For children and adolescents: * Diagnosed with an RD listed in Table 2. * Age between 8 and 18 years. * Sufficient knowledge of the German language. * Declaration of informed consent must be signed by at least one legal guardian for all participants under 18; adolescents aged 14 - 17 additionally provide their own written consent. * Lives at home (defined as sleeping inside of the home for more than four days per week, including weekends). For parents: * The child is affected by an RD listed in Table 2. * The child's age is between 1 and 18 years. * Sufficient knowledge of the German or English language. * Availability of the signed declaration of informed consent. * Only one child with a diagnosed RD. * Up to two caregivers may participate per child. A stepparent may be included if they reside with the child, defined as spending at least three nights per week (including weekends) in the same household. * Requirement ESM: Child lives at home (defined as sleeping inside of the home for more than four days per week, including weekends). Exclusion Criteria: For children and adolescents: * The child is affected by an RD other than listed in Table 2. * Age under 8 or over 18 years. * Not sufficient knowledge of the German language. * Lack of informed consent from at least one legal guardian (required for all participants under 18); and, for adolescents aged 14 - 17, absence of adolescent's own written consent. * Lives outside of the home (defined as sleeping outside of the home for more than three days per week, including weekends). * Cognitive impairment. For parents: * The child is affected by an RD other than listed in Table 2. * The child's age is under 1 or over 18 years. * Not sufficient knowledge of the German nor English language. * Declaration of informed consent not signed. * More than one child with a diagnosed RD. * Requirement ESM: Child lives outside of the home (defined as sleeping outside of the home for more than three days per week, including weekends).