Anne Rugari was first introduced to Krabbe disease in 1986 when her infant son was diagnosed after months of neurologic decline. In 1999 she had a daughter that was diagnosed at two weeks of age, becoming the fourth newborn in the world to receive a transplant for Krabbe. Anne’s diverse experiences along with her passion to advocate for better treatments has given her opportunities to work with many Krabbe disease stakeholders to assist in moving the science forward.
Anne’s journey with Krabbe disease led her to establish Partners For Krabbe Research (2012) and is the Co-Founder of KrabbeConnect (2017). She is the Consultant for the Brain and Tissue Bank (2015), working with families wishing to donate their loved one’s brain and tissues for research.
She has been involved with supporting families and caregivers as a patient engagement manager; written two children’s books about rare disease; was chosen Rare Disease Difference Maker by Engage Health and is a Consultant/Advocate in the rare disease community.
Anne enjoys traveling, spending time with her oldest son and his family, boating, fishing, walking the beach, and playing with her grand dogs.