The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. The RARE Helpline is staffed by Rare Voices Australia personnel, including those with qualifications in psychology, social work, and Mental Health First Aid.
The RARE Helpline is not a crisis or emergency service.
In the event of an emergency, please call an ambulance on 000, or these support lines:
Lifeline 24-hour Counselling: 13 11 14
Suicide Call Back Service: 1300 659 467
What is the RARE Helpline?
The RARE Helpline is a service navigation and information helpline that can assist you in finding more information and support for rare diseases.
The RARE Helpline can:
- Support people to connect with existing reliable information.
- Provide resources that respond to people’s specific needs.
- Help to increase people’s health literacy and engagement with care and support services.
- Assist in connecting people with existing health services where possible.
The RARE Helpline CANNOT provide medical advice, interpret medical records, or recommend specific health professionals. The RARE Helpline provides service navigation support and is an information helpline for rare and complex diseases. The RARE Helpline does not intend to provide a health service to users.
Important Update
Since July 2023, the RARE Helpline has been providing service navigation support for Australians living with a rare and complex disease. This work is part of The Navigator Project grant funding, which continues until 30 June 2026.
RVA has been engaging in ongoing discussions with the Department of Health, Disability and Ageing in preparation for the grant’s conclusion. From 14 February 2026, the RARE Helpline will cease operating. Ahead of this date, RVA is drawing on the learnings from the RARE Helpline specifically and The Navigator Project more broadly to develop a RARE Help page that will replace this page.
The RARE Help Page
This page will consist of resources that will be codesigned and evaluated by people living with a rare disease. These resources will be delivered in plain English formats and target populations with low levels of health and English literacy. The resources will be based on the most common queries RVA has received while operating the RARE Helpline.
Call for Assistance Today!
The RARE Helpline operates from
Monday to Friday 9:00 AM to 5:00 PM (AEST)
