RARE Helpline: Service Navigation Support for Australians Living with a Rare and Complex Disease

RARE Helpline

Staffed by appropriately trained Rare Voices Australia (RVA) personnel*, the RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. For queries about the Rare Awareness Rare Education (RARE) Portal, please go to the contact page.

*Including qualifications in psychology, social work and Mental Health First Aid.

The RARE Helpline:

  • Supports people to connect with existing information that is reliable
  • Provides resources that respond to people’s specific needs
  • Helps to increase people’s health literacy and engagement with care and support services
  • Assists in connecting people with existing health services and/or professionals where possible

Please note: RVA staff cannot provide medical advice. For all urgent medical matters, please refer to the emergency department of your local hospital or call 000. For other medical matters, contact your medical and/or health team. If you are looking for support for a particular rare disease, see the A-Z Support Directory on RVA’s website.

Contact Information and Hours

Phone: +61 (0)499 549 629
Hours: Monday to Friday 9.00am – 5.00pm (AEDT)

Note: when you call the RARE Helpline, you’ll be prompted to fill out the form below and to leave a message. Filling out the form helps our team to best assist you. When you leave a message, one of our team members will call you back as soon as possible. If you need help filling out the form, please let us know in your voice message or email: communications@rarevoices.org.au.

About the RARE Helpline

The RARE Helpline is one of three key components of The Navigator Project, which was named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant. The Navigator Project will support the estimated two million Australians living with a rare disease to navigate the health system, including via the assistance of telehealth nurses. Read more about The Navigator Project on RVA’s website.


If you have specific feedback, we encourage you to communicate directly with the RVA team member you interacted with. If you prefer to send your feedback in writing, or would like to make a complaint, we encourage you to email admin@rarevoices.org.au with the subject line ‘Feedback/Complaint’. Your feedback is important to us and assists RVA in reviewing and improving how we work. We will acknowledge the receipt of your feedback/complaint and request any further information if required. RVA will respond to all messages marked ‘Feedback/Complaint’ and endeavour to do so within 10 business days. If we have not responded to your message after 10 business days, please resend your email in the event we did not receive your original message (e.g. due to technical issues).