Agnes Nsofwa is a Global Health Advocate and consultant specialising in Sickle Cell Disease (SCD) and Mental Health, the Founder and CEO of Australian Sickle Cell Advocacy Inc (ASCA).

ASCA was formed because of Agnes’ experience with SCD when their daughter was diagnosed in late 2009. A mother of four children, Agnes became a Registered Nurse to understand SCD and what her daughter was suffering.

ASCA is dedicated to supporting and representing those affected by SCD in Australia with a vision is to reduce the impact of SCD on all Australians. It provides comprehensive patient information as well as emotional and practical support.

Amplify Sickle Cell Voices International Inc (ASVI)

Agnes founded Amplify Sickle Cell Voices International Inc (ASVI), an initiative with the aim of giving a voice to sickle cell warriors, caregivers, and healthcare.

Launched in 2020, Agnes brought together over 45 people affected by SCD from over 23 countries from both the Anglophone and Francophone countries to take part in a series of webinar to increase the SCD awareness.

After the success of part one which ran for over five months, Agnes brought 51 people from over 25 countries to take part in part two of ASVI running in 2021 for six months.

ASVI was created as result of the Facebook Live show that Agnes hosts called “Sickle Cell Talks with Agnes” which airs weekly on Facebook via Zoom to hear stories from different sickle cell stakeholders.

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With over 8 years experience in advocating for a rare disease in a country that didn’t know much about Sickle Cell Disease, Agnes was thrown into the deep end where her daughter was diagnosed with it in 2009. She made it her mission to teach herself as much as she could about the disease, to support her daughter with what she was going through.

As an advocate Agnes can:

– Assist you realise your dream as an influential advocate

– Turn your dream into a reality

– Give you a voice for Sickle Cell Disease

Nominated and finalist in WEGO Health Awards 2020, Agnes has also been recognised by the Federal Health of Minister – Australia for her work in sickle cell disease awareness.

Agnes was featured speaking about her experience in sickle cell disease in the Lancet Haematology Journal, and has spoken at different conferences to highlight sickle cell disease in Australia.

Want to share your story on SCD? Contact me on LinkedIn or email me on
Partner with Agnes to bring ASVI in your country, Remember, #YourVoiceMatters