About Jessica Fabre Navigating Rare
My daughter Sophie was undiagnosed, misdiagnosed and treated for the wrong disease before being diagnosed with a rare muscular dystrophy LGMDR1. Navigating Rare was founded by me Jessica Fabre, a mother who has experienced the frustrations that come with having a child with a rare disease while navigating the healthcare system in a search for answers. Her daughter’s journey inspired Jessica to advocate for early genetic screening and patient-centered care. Through education and advocacy, Jessica strives to make a difference in the lives of those affected by rare diseases, while collaborating with physicians to help them better understand the gaps in healthcare many rare patients face. I would like to share our story at a rare disease day event in my community either in a caregiver meeting or provider seminar.
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