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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Michael Scott
Finance Manager
Mike grew up in San Francisco and received his bachelor’s degree in accounting from San Francisco State University. As a child, he spent his summer vacations at the family ranch in Wyoming, where he developed a love for fishing and motorcycles. After moving to Santa Cruz, Mike worked for a large nonprofit for many years while cultivating his passion for surfing and racing motorcycles. Moving to Oregon with his two dogs, Lucky and Peanut, Mike has achieved his lifelong dream of building his motorcycle track and pursuing his love of surfing and the outdoors.
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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.