The Albanese Government has delivered on another election commitment, with around two million Australians diagnosed with a rare or complex health condition now able to call a dedicated helpline that provides vital information and support that fits their needs.
The RARE Helpline is now fully operational and staffed by a team of dedicated personnel from Rare Voices Australia (RVA) with qualifications in psychology, social work and Mental Health First Aid.
The helpline has been operating in an interim capacity since July 2023 and has already received calls from people in every state and territory, providing advice and information on more than 45 different diseases.
The now fully operational hotline has well trained and compassionate staff that are available to answer questions and can provide:
- reliable information about particular diseases
- advice for people seeking a diagnosis
- contact details for support organisations and clinical centres; and
- emotional support.
The helpline was established with a $2.5 million grant from the Albanese Government, as part of an election commitment to help Australians with a rare disease to navigate the health system.
The RARE Helpline can be accessed by calling 0499 549 629 or by visiting rareportal.org.au/rare-helpline/.
The helpline is available during business hours from Monday to Friday for patients, families, carers and health professionals.
Quotes attributable to Minister Butler:
“Life can be difficult enough for people with a rare condition. Navigating the health system shouldn’t be an additional burden they have to bear.”
“We know many patients, their carers and families find it difficult to manage these rare and complex conditions and this can affect their mental health and make them reluctant to engage with the health system.”
“Through our investment in the RARE Helpline and the Navigator Project, the Albanese Government is making it easier for patients to find clear and reliable information, resources and services.”
Quotes attributable to Nicole Millis, CEO Rare Voices Australia:
“The great complexity, unmet need and uncertainty in rare and complex diseases can be incredibly overwhelming. The RARE Helpline provides timely access to information and answers key questions people living with rare and complex diseases often face.”
“To date, the majority of people have contacted the RARE Helpline about diseases for which there is no specific patient support group. The RARE Helpline is helping to reach the most vulnerable individuals – who otherwise would have nowhere else to go.”