Executive Director @aggien_mn had a lovely #meeting this morning with @mariavamvakinou_mp discussing #SickleCell in #Australia. Discussed the need to have a #SCD surveillance registry, prenatal screening of at-risk communities, more research on this condition among other things. A very productive meeting.
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.