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.