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Why Fair for Rare

Australians living with rare disease deserve equal access to safe, effective treatments and healthcare management in a coordinated and adequately resourced approach, no matter where they live.  Australia’s health system is not giving people with rare disease a ‘fair go’. 

Australia needs to do better. We need a health system that is Fair for Rare. Rare Disease needs to become a national health priority so Australians with rare diseases can have extended and improved lives. While some great work is starting to happen in various parts of the country, more coordination, greater access and better resourcing is urgently needed.  Through the provision of a coordinated care and health system; rare disease patients could have access to world class, best practice provision of diagnosis; care; therapies; treatment, support services and research.

The Fair for Rare campaign enables people living with a rare disease to share their story of living with rare disease and demand a ‘fair go’. Fair for Rare will show the real impact of rare diseases in Australia and the disparity in access to care, treatment and research. We will showcase effective responses to rare disease and call for these to be accessible for all.   The rare disease community calls on policy makers to take action and support Fair for Rare.

 

The Ripple Effect of Rare Disease

A rare disease is any life-threatening or chronically debilitating disorder or condition which is uncommon in the general population. Rare disease typically exhibit a high level of symptom complexity and they very frequently require specialised combined treatments and clinical care. Current conservative estimates indicate that approximately 6-8% of Australians are affected by a rare disease.

There are many issues common to rare disease regarding diagnosis, access to coordinated care, access to services, access to treatment and role of research. Diagnosis is often difficult or delayed and many rare diseases have no effective treatment. Some require new expensive treatments and patients often have no choice but to lobby Government for access to treatment. Information about rare diseases is often scarce or difficult to access for the health professional, patient and supporters. The psychological burden and lack of practical support is a major issue in the treatment and management of rare diseases.