Michele Herndon’s son Mitchell began developing symptoms of an ultra-rare neurological condition in 2012. He went for five years without answers and in 2017, enrolled in the Undiagnosed Diseases Network, an NIH-funded research study that seeks to diagnose people with the most puzzling conditions. He was diagnosed with the genetic disease Mitchell syndrome, which was named for him. He died from the disease in 2019. Herndon not only started the Mitchell & Friends Foundation but is today the program director of the Undiagnosed Diseases Network Foundation. There she has helped establish the UDNF’s new Patient Navigator Program, which is designed to answer general question undiagnosed patients may have, connect them to resources, and guide them through the UDN process. We spoke to Herndon and F. Sessions Cole, secretary of Undiagnosed Disease Network Foundation and professor of Pediatrics at Washington University School of Medicine, about the diagnostic odyssey, the work of the Undiagnosed Disease Network and the Undiagnosed Disease Network Foundation, and how the new Patient Navigator program works.
Pregnancy and Motherhood for a Woman with SMA
Steps to Improve Data Gathering of Rare Diseases
Rare Patients Learn to Make Their Voices Heard
Empowering Patient Organizations with Real-World Data
A Healthcare Communications Student Gets an Education as a Patient
Expanding the CRISPR Toolkit
Marrying Antibodies to RNA Therapies to Target Previously Inaccessible Tissues and Cells
Expanding Access to Whole Genome Sequencing Across the Globe
A First-in-Class Approach to Treating a Rare and Chronic Liver Disease
A New Approach to Treating a Rare Endocrine Disorder
Detecting Genetic Disease Prior to Birth
Turning Words into Action: Equity, Diversity, and Inclusion in Rare Disease
Chasing Cures
A Map to Navigate A Rare Disease
A Popular Cancer Target Is Eyed for a Rare Immune Disorder
Leveraging a Gene Therapy Approach to Maximize Speed and Minimize Costs
Programing the Body to Make Its Own Medicine with Gene Therapy
Developing in Vivo Gene Editors that Target Liver Diseases
A Find-and-Replace Approach to Fixing the Mutation Underlying Sickle Cell Disease
A Bet on a Unique Set of Vectors
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