Draft:Agnes Nsofwa
Australian nurse and sickle cell disease advocate
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Agnes Nsofwa is a Zambian-born Australian nurse, health advocate, and author known for her work raising awareness of sickle cell disease in Australia. She is the founder of Australian Sickle Cell Advocacy Inc. (ASCA), a nonprofit organisation that supports individuals and families affected by the disease and advocates for improved awareness, screening, and treatment.[1]
Submission declined on 17 March 2026 by MSK (talk).
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Comment: See our policy on autobiographies. monkeysmashingkeyboards (talk) 20:43, 17 March 2026 (UTC)
Agnes Nsofwa | |
|---|---|
| Born | Zambia |
| Occupations | Registered nurse, health advocate, author |
| Organization | Australian Sickle Cell Advocacy Inc. |
| Known for | Sickle cell disease advocacy |
Early life and education
Nsofwa was born in Zambia and later migrated to Australia, settling in Perth with her family in 2004.[2]
Following the diagnosis of her daughter with sickle cell disease, Nsofwa pursued further education in healthcare and later trained as a registered nurse in order to better understand the condition and support families affected by it.[3]
Advocacy and career
Nsofwa began her advocacy work after her daughter was diagnosed with sickle cell disease at 14 months of age following repeated hospitalisations and delayed diagnosis.[4]
In 2014 she created a social media support network connecting families affected by sickle cell disease in Australia. The initiative later developed into Australian Sickle Cell Advocacy Inc. (ASCA), a nonprofit organisation formally established in 2018.[5]
Through ASCA, Nsofwa has advocated for improved awareness of sickle cell disease, better treatment options, and stronger support networks for patients and families.
Agnes has been a strong advocate for the introduction of newborn screening for sickle cell disease in Australia. Through her dedicated efforts, alongside her team at Australian Sickle Cell Advocacy Inc, the program was recommended by the Medical Services Advisory Committee in February 2024. On 12 February 2026, the newborn screening program for sickle cell disease was officially implemented in Victoria, Australia.[6]
Personal experience and medical milestone
Nsofwa’s daughter received treatment for sickle cell disease at the Royal Children's Hospital Melbourne. In 2019 she underwent a bone marrow transplant using her sister as a donor, which cured the disease becoming the first child to be cured of Sickle Cell Disease heterozygous SS at the Royal Children's Hospital.[7]
The experience influenced Nsofwa’s continued advocacy for improved treatment access and awareness of advanced therapies for people living with sickle cell disease.[8]
Writing and public engagement
Nsofwa is also an author and public speaker who has written educational material about sickle cell disease, including the children's book So I Have Sickle Cell Disease and Caring For Children Living With Sickle Cell Disease - A Mother's Perspective, which aims to help readers understand the condition and raise awareness among families and communities.[9]
Media coverage
Nsofwa's advocacy work has been discussed in Australian media outlets in the context of sickle cell disease awareness and public health discussions in Australia.[10]
See also
- Sickle cell disease
- Australian Sickle Cell Advocacy Inc.
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