FOI 5260 – RARE Helpline Data

Written by Claude Haiku 4.5 from the extracted text on 27 Feb 2026. It can miss or misread redacted and scanned pages. Check the source before relying on it.

The RARE Helpline, a support service for people living with rare diseases, commenced operations with interim data showing early usage patterns and unmet care gaps. The helpline provides information resources, emotional support, and connections to health services, while collecting evidence on support deficiencies for rare disease populations. Initial statistics from fewer than 100 enquiries indicated 62% were from people with rare/complex diseases, 23% from carers, and 10% from healthcare professionals; approximately 12% sought diagnostic assistance. Requests covered 46 different rare diseases across all Australian states and territories. Key findings revealed that 45% of callers sought support organisation information, 31% wanted disease-specific information, and 20% sought clinical centre details. Notably, more than half of callers had no disease-specific support group available for referral, highlighting significant gaps in existing rare disease support infrastructure. The helpline provided emotional support to 36% of users.