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.
*Including qualifications in psychology, social work and Mental Health First Aid.
In the event of an emergency, call an ambulance on 000 or these support lines:
Suicide Call Back Service – 1300 659 467
Lifeline 24-hour counselling – 13 11 14
Leave a Query
Please complete the form below or call +61 0499 549 629 from Monday to Friday 9am–5.00pm (AEST) to speak with a RARE Helpline team member for assistance with completing the form. If you are experiencing a medical emergency or mental health crisis, please call the numbers listed above.
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 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 0499 549 629
Hours: Monday to Friday 9.00am – 5.00pm (AEST)
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: [email protected].
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.
Feedback/Complaints
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 [email protected] 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).
