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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Richard Gelinas
Senior Research Scientist | PhD | Seattle, WA
Dr. Gelinas has worked on problems of gene structure and function for his entire career. At ISB he uses advanced RNA and protein profiling methods to identify biomarkers for diseases of the brain, heart, and lung. He also contributes to studies of the genetic basis of mental disorders such as Alzheimer’s Disease and bipolar disorder and bone marrow disorders such as Fanconi Anemia.
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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.