When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...
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Rachel Altmann
Board Member
Mother of Nina
Rachel has been active in the Fanconi anemia community for several years, as an FA parent, a contributor to FARF newsletters, and a fundraiser. She has worked in the education sector for many years, as an environmental educator at Hawai’i Nature Center and most recently as Library Outreach Specialist at Multnomah County Library in Portland, Ore. Her daughter, Nina, succumbed to complications from Fanconi anemia in 2006 at age three. Rachel continues to honor Nina’s legacy by working to advance FA research and support other families who face FA.
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For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.
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.