Undiagnosed Children's Awareness Day
Undiagnosed Children’s Awareness Day aims to increase awareness and understanding of the impact and prevalence of undiagnosed genetic conditions. The day is not only about our SWAN children, it is about creating awareness in the wider community, and therefore gaining more recognition and funding for our support group. This will then enable us to continue to provide information and support to families caring for a child with an undiagnosed or rare genetic condition.
According to current estimates, 1 in 20 children are born with a genetic disorder, yet we only hear about the most common syndromes, or the ones that receive the most funding or have the biggest lobby groups. Of those children who present to geneticists with syndromic features, 60% may not ever receive a diagnosis, and it is the families of those very children that we aim to support.
Please join SWAN families and friends in raising awareness of undiagnosed genetic conditions.