On 18th October 2019, we had the privilege of accepting an invitation from partner organisation Rare Voices Australia to attend an event at Parliament in Canberra. The event was to see the launch of the report, ‘Disability & Rare Disease: Towards person-centered Care for Australians with Rare Disease. RVA’s CEO, Nicole Millis also provided an update on the National Strategic Action Plan for Rare Diseases. The event was co-hosted by Dr. Mike Freelander MP and Mr. Trent Zimmerman MP. This event gave us an opportunity to interact with other patients organisations representing different rare diseases. It was also an opportunity for us to interact with different Members of Parliament and journalists who we exchanged contact details with and have been contacting them to advocate for the needs of people living with SCD.
Australian Sickle Cell Advocacy Inc (ASCA) is a patient advocacy group supporting the rights of people living with Sickle Cell Disease (SCD) as they navigate the healthcare system in Australia. ASCA is a non-profit organisation started in 2014 and officially registered in October 2018. An advocacy group formed to fill the gap of highlighting the rising numbers of sickle cell disease in Australia. Although rare in some part of the world like Australia, sickle cell disease is affecting a lot of people.