RVA is Australia's national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia.

Tuberous Sclerosis Australia is a volunteer run organisation which helps families living with TSC through phone, email and online support services, educational materials and events, facilitation of peer support and funding of TSC research in Australia and New Zealand.