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Kristin Rapp

Vice President

  Kristin was the first person diagnosed with Homocystinuria (HCU) as an infant in Maryland following the start of newborn screening in that state. Despite being B-6 non-responsive, she has not had any major complications from HCU, and strongly believes that is due to her early diagnosis, and dietary management of the disorder throughout her life. Kristin is a passionate advocate for newborn screening,  for Homocystinuria and other rare diseases as well as an accomplished marathon runner. She has been involved with the Running for Rare Disease Team since 2012, and has been one of their top fundraisers for the National Organization of Rare Disorders.

Click here to read Kristin's patient bio