You can read the first full message that RVA distributed regarding COVID-19 here.
Continue readingAuthor: Sarah Cannata
COVID-19: Message from Rare Voices Australia
As the COVID-19 pandemic continues, the team at Rare Voices Australia (RVA) shares our best wishes to those impacted personally and to the wider community during these uncertain times. We feel now is a good opportunity to distribute the below information.
Our Rare Disease Community
Members of our rare disease community may be particularly vulnerable to COVID-19. The team at RVA encourages the rare disease community to remain updated and aware of the often-changing response to COVID-19.
Click here to read RVA’s full message regarding COVID-19.
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.
Click through to read the full article.
Rare Disease Day 2020: Far North Queensland Fun Run
Rare Voices Australia (RVA) attended the Far North Queensland Fun Run in the lead-up to Rare Disease Day 2020 and were interviewed by Channel 7. Click here to watch the segment.
Outrage Over Brothers’ NDIS Payments
Click here to read media generated following the research of the Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases report.
Are Rare Diseases Being Overlooked by the NDIS?
Rare Voices Australia’s (RVA) CEO, Nicole Millis, was interviewed by Claire Lindsay on ABC’s AM radio show. Click here to listen to the interview.
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’.
Click here to read the full article.
‘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.
