The Rare Awareness Rare Education (RARE) Portal is managed by a small but dedicated team. Use the form below for general enquiries.

RARE Helpline Support

For service navigation support for rare and/or complex diseases, please go to the RARE Helpline page and complete the form, or call +61 499 549 629 to speak with a RARE Helpline team member.

In the event of an emergency, call an ambulance on 000 or these support lines:

Lifeline 24-hour counselling – 13 11 14  

Suicide Call Back Service – 1300 659 467 

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

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, click here.

For all media/interview enquiries, please contact: [email protected]

Postal:PO Box 138, Mentone, Victoria, 3194
Phone:+61 (0) 497 003 104
Office hours:Monday to Friday 9.00am – 5.00pm (AEDT)