Children have the right to a relationship with both their parents.
Family unity is important for all children, especially those who have extra health needs. A family unit provides support and reassurance for a child in times of need. Rare disease can place stress on families and lead to family breakdown, support to reduce this stress is critical. If the family is separated, contact with both parents is the best outcome, if it is possible.
Children with rare disease are often separated from their family for health reasons such as appointments, hospital stays and procedures. This is even more significant when people live in rural and remote areas and must travel for these activities.
Healthcare in the home and telehealth, where appointments are done over the phone or online can reduce the impact on children.