Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
The SWAN Advocacy Tool Kit was designed to help SWAN parents and carers advocate for their children. It focuses on advocacy in the following settings: healthcare, social services and supports (including the NDIS) and education.
SWAN wishes to thank the Genetic Support Network of Victoria (GSNV) and the Margaret Sahhar grant for their generous support in enabling SWAN to develop this resource for SWAN families and the wider genetic support group community.
Advocacy is speaking up to support a cause, person, idea, plan, place or thing. It can be done in a variety of ways. As a SWAN parent/carer, the person might be you, your child or your family. The greater cause may be improving the lives of families who have children with rare or undiagnosed genetic conditions.
There are many reasons a SWAN parent/carer might advocate for their child and there is no right or wrong way to advocate. To learn more, click on the image (left) to access our tool kit.