Family stress due to excess demands
Children with rare disease have the right to have both their physical and mental needs looked after. It is important to consider the mental health of children and their families living with rare disease because they can experience high levels of stress. We need to make sure that accessing services does not make this stress worse. It can take a long time to diagnose a rare disease, and even after diagnosis can be hard to find information or a specialist who knows about the disease. Health professionals need to be aware of how important mental health support is for rare disease families. Educating health professionals about the resources and support groups available to families living with rare disease is also essential to reduce the mental stress of living with rare disease.