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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Aileen Carlos
Board Member | JD
Aileen is a lawyer based in Portland, Ore. She was introduced to Fanconi anemia while attending law school with Jon Frohnmayer and taking classes from Dave Frohnmayer. She has worked in the legal nonprofit and education sector, and continues to support nonprofits with her legal and dispute resolution experience. Aileen grew up in Pittsburgh, Penn., and continues to be an avid Pittsburgh sports fan despite her distance. She and her partner recently bought their first home, with a fenced in yard that their dog adores. Aileen enjoys hiking and photography, and volunteers for several nonprofits in her free time.
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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.