AROUND two million Australians diagnosed with a rare or complex health condition can now call a dedicated helpline that provides vital information and support that fits their needs.
The Rare Awareness Rare Education (RARE) Helpline is fully operational and staffed by qualified personnel from Rare Voices Australia (RVA).
The helpline has been operating in an interim capacity since Jul and has already received calls from people in every state and territory, providing advice and information on more than 45 different diseases.
The hotline's staff can answer questions and can provide 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 govt grant.
RVA CEO Nicole Millis said, "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 for people living with rare and complex diseases for whom there is no specific patient support group."
The RARE helpline can be accessed by calling 0499 549 629 or by visiting HERE.
The above article was sent to subscribers in Pharmacy Daily's issue from 20 Dec 23
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