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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Sandra Hilliard
Finance Coordinator
Sandra brings a joyous, bubbly, and infectious presence to the FARF team. Motivated by the families FARF serves, her coworkers, and the impact the organization makes, Sandra strives to help achieve FARF’s mission with a smile and a light-hearted spirit. As Finance Coordinator, Sandra is responsible for overseeing all aspects of the organization’s bookkeeping and accounting functions. Born and raised in the countryside of Oregon, she now lives in Eugene with her partner, Scott, and her two teenagers, Carly and Ashton. On any given weekend, you could find Sandra out fishing on her boat, hanging with her kids, or cuddling with her grandbaby. Between her duties at FARF and at home, Sandra is always busy but never fails to offer a smile and a kind word to anyone she encounters.
What would be impossible for you to give up?
Spaghetti! I could eat it for every meal (and do, sometimes)!
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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.