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.
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Amelia Hawkshaw
Member
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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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.