Hope on the Horizon

Imagine your child is showing symptoms that confound doctors. 

You see expert after expert, getting test after test. 

Perhaps you’re even scoffed at along the way, however, you persevere because your instincts as a parent are screaming at you that something is not right with your child and you know early interventions produce the best outcomes.

Rare Voices Australia’s (RVA) CEO, Nicole Millis, and Deputy Chair and Director, Kane Blackman, were interviewed by The West Australian.

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Amplifying the Patient Voice in Rare Disease Access

Rare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom.

As a person living with a rare disease and a professional in healthcare communications, I occasionally have moments of disconnect. Such as when I began this article.  

Let me explain. In Thinking Fast and Slow, a mental model proposed by Daniel Kahneman, system 1 thinking is characterised by ‘emotive, instinctive’ thought patterns, while system 2 thinking utilises a deliberate, rational frame of mind. We spend more time in system 1 thinking than most of us care to admit. 

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New Plan for Grappling with Rare Diseases

When Kane Blackman’s son started experiencing severe symptoms of an unknown condition, he was told his child was delayed and would eventually catch up.

It was then suggested his son probably had cerebral palsy.

Finally, he was diagnosed with Angelman Syndrome, a rare genetic disease affecting one in 15,000 Australians. It prevents speech, causes seizures, impacts motor co-ordination and requires a lifetime of care.

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Rare Voices Australia: Working to Make it Fair for Rare

The burden of rare disease remains unacceptably high according to one national organisation fighting for the rights of nearly 2 million Australians in this category. 

Rare Voices Australia CEO Nicole Millis explains the progress being made towards addressing the inequality in the health system – effectively making it ‘Fair for Rare’.

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‘Orphan’ Rare Diseases Focus of New Federal Government Support Plan

The federal government will establish Australia’s first National Rare Diseases Framework and Action Plan to support people with rare conditions such as Batten disease, muscular dystrophy and mitochondrial disease.

Advocacy group Rare Voices Australia (RVA) will receive $170,000 to develop the action plan, Health Minister Greg Hunt will announce at the 2018 Rare Diseases Summit in Melbourne on Friday.

Click here to read the full article.