Australian Sickle Cell Advocacy Inc

Overview

Australian Sickle Cell Advocacy Inc (ASCA) is a not-for-profit organisation dedicated to supporting individuals and families affected by sickle cell disease (SCD) in Australia. ASCA is formally registered as a charity and serves as the peak body in Australia advocating for the rights of those living with SCD.

History

ASCA was established in 2014 and officially registered in October 2018. It has chapters or representatives in several states and territories across Australia.

Objectives

The primary objectives of ASCA include:

• Raising Awareness: ASCA aims to increase awareness of sickle cell disease, which is considered a rare condition in Australia.
• Improving Healthcare Services: The organisation seeks to identify and advocate for services that benefit individuals with SCD.
• Policy Engagement: ASCA engages with policymakers to ensure SCD receives recognition and support comparable to other chronic conditions in Australia.
• Access to Medications: The organisation advocates for the inclusion of all medications used to manage SCD on the Pharmaceutical Benefits Scheme (PBS), ensuring accessibility for all affected individuals.
• Screening and Education: ASCA pushes for universal SCD screening and educates healthcare workers about the disease.
• Stigma Reduction and Research: ASCA encourages discussions to remove the stigma associated with SCD and supports research into more accessible treatment options.

Activities and Impact

ASCA organises fundraising activities to contribute to SCD research and collaborates with other entities to raise awareness about SCD, particularly its challenges as a rare disease in Australia. The organisation also participates in events like Rare Diseases Day to highlight the impact of SCD on affected families and the need for early diagnosis and effective care.

Mission and Future Directions

ASCA continues to advocate for Australian SCD national guidelines, prenatal/newborn screening, and a comprehensive SCD surveillance database. It aims to secure recognition and access to services for chronic conditions from health departments like Medicare.

By engaging with communities, policymakers, and healthcare providers, ASCA strives to improve the quality of life for individuals and families affected by sickle cell disease across Australia.

[1] https://aussicklecelladvocacy.org/about-us/ [2] https://www.acnc.gov.au/charity/charities/2168463d-b79d-ea11-a812-000d3ad1f497 [3] https://www.onescdvoice.com/place/australian-sickle-cell-advocacy/ [4] https://aussicklecelladvocacy.org/sickle-cell-disease/ [5] https://www.rarediseaseday.org/friends/australian-sickle-cell-advocacy-inc/