When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...
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Amelia Hawkshaw
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Amelia is 26 years old and lives in Sydney, Australia. After receiving her FA diagnosis in her early 20s, Amelia flew across the world to attend her first meeting for adults with FA in 2017. Since then, she has become a leader in the community, sharing her story and advice with younger generations. In 2019, Amelia and her family began the process to start an Australian FA support organization to connect FA families and researchers across Australasia.
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For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.
Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.