Rights should be available to children
Children across the world live with rare disease and often have poor quality of life – problems in our health systems can make this worse. We need to look at how organisations can solve these problems and improve quality of life.
Children have rights listed in the UNCRC and to make sure these rights are met, we need laws. To create good laws, we use frameworks to describe the problems faced by patients and families with rare disease, their doctors and other health experts and how we might solve these problems.
Europe is a leader in increasing awareness and change in rare disease by creating frameworks and laws. In Australia, discussions between the government and key stakeholders in the rare disease sector mean there is ongoing work to create a long-term plan to improve outcomes for people living with rare disease. This collaborative work is being led by Rare Voices Australia (RVA).