Helping patients navigate a rare diagnosis

Lily Fretwell with Dr Gareth Baynam at Perth Children's Hospital. Image by Stephen Heath Photography, courtesy Perth Children's Hospital Foundation

The often confusing and complex journey navigating the health system and support services will soon be a little easier for families with rare diseases thanks to the soon-to-be-live Navigator Project.

This initiative led by Rare Voices Australia (RVA) in partnership with Child and Adolescent Health Service Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases at Perth Children’s Hospital (PCH) and the Sydney Children’s Hospitals Network (SCHN), aims to improve equity of access and service management for those living with a rare disease.

Consisting of three core components:

• RARE Helpline
• Telehealth nurse service navigation trial sites
• Engagement with three consumer-led rare and complex disease organisations

An interim RARE Helpline will be available from next month ahead of the project being fully operational later this year.

Dr Gareth Baynam, Clinical Geneticist and Medical Director of the Rare Care Centre at PCH said,

“Nurses are the world’s largest, most diverse and most accessible workforce. This initiative through the Rare Care Centre is further unlocking the power of nurses to better meet the enormous needs of the 63,000 children in WA living with rare diseases and their families.”

Funded by the Rare and Complex Disease Telehealth Nurse Program grant, and the Australian Government for up to $2.48 million the project will initially operate over three years.

Learn more about the Navigator Project on the Rare Voices Australia website.