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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Helen Potts
Event Project Manager
Born and raised in Oregon, Helen comes from a large and close-knit family. Inspired by working with children, Helen pursued a degree in Family and Human Services at the University of Oregon. Her drive to work for a cause she cares about led her to FARF. “I’m excited about the work and the environment. The team is incredibly talented and passionate. There are so many people who play a role in the FA community; I’m honored to contribute to the larger picture.” Helen brings her positive energy and can-do attitude to the team and oversees everyday operations of FARF, as well as the planning and execution of all conferences and meetings. She’s an expert organizer and natural people-person who is goal-driven. In her free time, you might find Helen trekking up a hillside, running on the trails, or curled up with a book or Netflix.
What are three words you aspire to embody?
Kindness, patience, and courage.
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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.