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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Elizabeth Swisher
Professor in Gynecologic Oncology & Adjunct Professor in Medical Genetics | MD | Seattle, WA
Dr. Swisher’s clinical interests include gynecologic cancer, cancer prevention, cancer genetics, novel therapeutics and minimal invasive surgery. Dr. Swisher wants to empower patients to use genetic knowledge to develop a cancer prevention plan that is right for them.
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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.