The Australian Cystinosis Foundation

Help for a better tomorrow

Empowering patients and families through education, community building, advocacy and support of research.

Awareness

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Research

Understanding Cystinosis

Join us in making an impact among those living with Cystinosis

Latest News, Blog Posts and More

Cystagon Supply Update – Australian Cystinosis Community

An update for the Australian Cystinosis community regarding Cystagon® (mercaptamine / cysteamine bitartrate) 150 mg capsules, following a shortage notification issued by the Therapeutic Goods Administration

Feeding Tube Awareness Week 2026

Today marks the beginning of Feeding Tube Awareness Week , and it is an honour and a privilege to share Todd’s story and his words on what it

Feeding Tube Awareness Week

Australasia’s Feeding Tube Awareness Week #FTAW2025 is celebrated nationally from 2-8 February 2025. FTAW aims to raise awareness about tube feeding and unite the community. Cystinosis

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Acknowledgement of Country

The Australian Cystinosis Foundation acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respects to them and their cultures and elders past, present and emerging.

The Australian Cystinosis Foundation is an independent not-for-profit registered charity dedicated to helping Australian patients with Cystinosis and their families. Through support, education, patient services and collaboration with medical professionals.