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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André Hessels
Board Member
Father of Dylan & Joy
André became involved with FARF when his two children, Dylan and Joy, were diagnosed with FA in 2013. Since then, he has participated in numerous runs to raise funds, including the New York, Chicago, and Boston marathons. André is a seasoned corporate financing specialist who is currently General Manager for Philips Medical Capital in Wayne, Penn. Originally from the Netherlands, André has worked in Europe, China and North America as a relationship banker for Rabobank. He brings a wealth of financial knowledge to the board and is looking forward to expanding his fundraising efforts.
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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.