Children should be involved in decisions about their health when possible.

Parents often make medical decisions for children because they are considered to have reduced decision-making capacity. Despite this, it is important to include children in decision making to a reasonable extent.

To make decisions about health they must provide informed consent. Informed consent is: Consent gained from an individual when they clearly understand the possible risks and benefits of an action or decision. Benefits and risks can be both short and long term. The information about medical procedures and treatments must be given in a way that can be easily understood and is able to be described back to a medical professional.

One example of this is genetic testing. Informed consent for genetic testing requires the person to have an understanding of the risks involved. Issues such as  the potential for psychological distress, secondary findings, and adult onset diseases must be discussed with parents, and, in an age appropriate way with children.

Children have the right to a full life.

This doesn't relate only to the length of their life, but the quality of life they have.  Children with rare disease often live with suffering and the chance of early death, so they need things like relationships, work, play, education and enjoyment. Healthy children and children with rare disease have the same rights to these things.

To achieve a full life, children with rare disease and their carers need support across many areas including health, financial, mental health, education and others.

Rare diseases are a major child health issue.

Although each rare disease is rare, as a group, they are common.  Up to 10% of the population may have a rare disease. Rare diseases are often associated with pain, disability, uncertainty and early death.  New information suggests that more than half of rare diseases start in childhood. This creates a large burden on children and their families very early in life.

To improve health and social outcomes for children and families living with rare disease, Governments must recognise that there is an unmet need.  This need must be addressed with positive policy that allows the burden of rare disease to be recognised, and the best interests of these children to be met.

The United Nations Convention on the Rights of the Child (UNCRC) applies to children across the world. Rare disease can also impact any child or family regardless of their race, social status, abilities, or family history.

Even though each rare disease only affects a small number of people (often defined as one person in 2000), there are many rare diseases which means that across the world there is a huge number of people affected.  Some estimates indicate that 6% and 10% of the population have a rare disease, and there is estimated to be 63,000 children living with rare diseases in Western Australia alone.

The total number of people affected by rare disease creates a global and universal health issue.

For more information visit acah.org.au/acah2019/