Research is very important to help find ways to treat and manage rare disease, but it is important that children with rare disease and their families are not taken advantage of. When families are desperate to help their child, they are more likely to take risks, such as experimenting with overseas research or treatment. It is important when a child or their family take part in research that there isn’t a safer or more reliable alternative, that the treatment can help the child, and that they are either paid for participating or have their costs covered. Being involved in research should not have a negative impact on the health of the child or the finances of the family. It is important that health professionals are informed about the risks and benefits of being involved in medical trials or treatments and are available and willing to explain these to the children and families at risk.
Article 32 & 34 https://www.unicef.org.au/…/Media/Our%…/childfriendlycrc.pdf