In 2017, Rare Voices Australia (RVA) launched its Fair for Rare campaign to enable people living with a rare disease to share their story and ask for a ‘fair go’.
The campaign used people’s story to further reiterate the need for rare disease to be recognised as a national health priority. The burden of rare disease, although largely hidden, is unacceptably high for people living with a rare disease, their families and carers, communities and the health system.
Fair for Rare saw the rare disease community coming together to call on policy makers to take action and support the estimated two million Australians living with a rare disease by adopting a framework that works towards equitable and early access for: diagnosis, coordinated research, access to treatments, access to services, data collection and coordinated care.
In May 2018, RVA was proud to accept the award for Best Patients’ Campaign for our 2017 Fair For Rare campaign at the Australian Patients Association's Annual Patient Awards Night 2018.
RVA extends a big thank you to our RVA Partner organisations and the Australian rare disease community for getting behind Fair For Rare. The campaign was a huge collaborative effort and it could not have been a success without all key stakeholders in the rare disease community coming together.