A parent is responsible for giving children as much information about their rare disease as the child can understand and trying to reduce the impact on them. To do this, parents need to understand the information they are providing and the rights of their child.

It is important for medical experts to give accurate information in a way people understand, to listen to what the child needs and to try to understand how the person living with a rare disease and their family feels.

Children with rare disease have different abilities, it is important for governments to let parents be the expert on their child. Parents should be trusted to teach children their rights and when needed, make decisions for them. This should mean that when the child is old enough to make decisions, they have the skills and information they need to do this.


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