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New RARE Helpline in Australia

Australia has taken a significant step forward in healthcare with the official launch of the RARE Helpline, a dedicated support system for approximately two million Australians coping with rare or complex health conditions. This helpline is not just a phone number; it's a lifeline for many who often feel lost in the vast ocean of healthcare.

A Compassionate and Qualified Team

Operated by Rare Voices Australia (RVA), the RARE Helpline boasts a team of professionals equipped with expertise in psychology, social work, and Mental Health First Aid. This ensures that callers are not just met with factual information but also with empathy and understanding, crucial for anyone navigating the challenges of a rare disease.

A Journey from Interim to Full Operation

Since its interim launch in July 2023, the helpline has demonstrated its necessity and efficacy. It has reached individuals in Australia's states and territories, providing advice and information on over 45 different diseases. This transition to a fully operational helpline marks a new chapter in providing dedicated support to those in need.

More Than Just Answers

The RARE Helpline offers a variety of services, including:

  • Reliable information about specific diseases.
  • Guidance for individuals seeking a diagnosis.
  • Contacts for support organizations and clinical centers.
  • Emotional support for patients, families, and carers.

This comprehensive approach ensures that the helpline is not just a source of information, but a pillar of support.

Government Support and Accessibility

With a $2.5 million grant, the RARE Helpline stands as a testament to the government's commitment to aiding Australians with rare diseases. Accessible via phone at 0499 549 629 or online at, the service is available to patients, families, carers, and health professionals alike.

Voices of Leadership

Minister Butler emphasizes the importance of this initiative: “Navigating the health system shouldn’t be an additional burden for people with a rare condition.” He acknowledges the mental health challenges and reluctance to engage with the health system that many patients and their families face. The RARE Helpline, along with the Navigator Project, is a step towards easing this journey.

Nicole Millis, CEO of Rare Voices Australia, highlights the critical role of the helpline in addressing the complexity and unmet needs in rare and complex diseases. She notes the significance of the helpline in supporting those without specific patient support groups, reaching some of the most vulnerable individuals in the community.

A Step Towards Compassionate Care

The RARE Helpline is more than just a number; it's a symbol of hope and a testament to the power of compassionate care. It stands as a beacon for those navigating the often turbulent waters of rare and complex health conditions, ensuring that no one has to journey alone.

Next step for Complex Lymphatic Anomalies

LGDA is working with Rare Voices Australia to be included as a resource on their website.