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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Joyce Owen
Director Emeritus | PhD
Joyce was a dear friend and neighbor of co-founders Lynn and David Frohnmayer; their daughters were playmates. When Kirsten Frohnmayer was diagnosed with FA, they were all devastated. Joyce, a molecular biologist, was able to help interpret information. When the Frohnmayers founded FARF, Joyce was one of the earliest board members. She did the page layout and editing of the FA Family Newsletter for a number of years, and several editions of the Handbook for Families and Guidelines for Clinical Care. She also designed the first FARF website.
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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.