24 episodes

This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide.

CoRDS Cast Benjamin Forred

    • Health & Fitness
    • 5.0, 6 Ratings

This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide.

    Episode 22 - The White Sutton Syndrome Foundation

    Episode 22 - The White Sutton Syndrome Foundation

    On this podcast Alyssa sits down with Josh and Amanda Couch from the White Sutton Syndrome Foundation along with Dr. Reid Sutton.

    Amanda is the Co-Founder and President of the White Sutton Syndrome Foundation and Josh is both the Creative Director and Secretary of the White Sutton Syndrome Foundation. They are parents  of three, the youngest of which has been diagnosed with White Sutton Syndrome.

    Dr. Reid Sutton is a clinical geneticist and clinical biochemical geneticist at Baylor College of Medicine & Texas Children’s Hospital in Houston. In his role as a clinical researcher with the Baylor-Johns Hopkins Center for Mendelian Genomics, he worked with graduate student Janson White on a number of projects, including the description of the spectrum of developmental and health issues in individuals with variants in the POGZ gene, that the Online Mendelian Inheritance in Man (OMIM) has designated “White-Sutton Syndrome”

    • 27 min
    Episode 21 - The PBCers Organization

    Episode 21 - The PBCers Organization

    In this episode, Alyssa and Polly sat down with Carol Roberts from the PBCers Organization.  You'll hear Carol share information on her organization and her journey as a rare disease patient diagnosed with Primary Biliary Cholangitis (PBC) which leads to cirrhosis of the liver.  Carol will lead us though her experience as an advocacy leader and a patient.  We hope you enjoy!

    • 23 min
    Episode 20 - IamGSD

    Episode 20 - IamGSD

    In this episode, Alyssa speaks with Stacey Reason and Andrew Wakelin with the IamGSD organization.  Stacey and Andrew are both diagnosed with one of the muscle GSDs that we cover in this episode, McArdle disease.  You'll hear about their advocacy efforts through IamGSD and learn about the diesease from their perspectives as patients.  Enjoy!

    • 28 min
    Episode 19 - The Malan Syndrome Foundation

    Episode 19 - The Malan Syndrome Foundation

    In this episode Alyssa sat down with Christal Delagrammatikas with the Malan Syndrome Foundation, and Dr. Richard Gronostajski who is the Director of the genetics, genomics & Bioinformatics Graduate Program at the University of Buffalo.

    Christal connected with Dr. Gronostajski which got him involved with Malan syndrome and further research. Here, you'll learn more about Malan syndrome and the efforts behind it as we dive deeper into the pod cast.

    • 29 min
    Episode 18 - Cure VCP Disease, Inc.

    Episode 18 - Cure VCP Disease, Inc.

    In this episode, Alyssa and Polly spoke with Nathan Peck, the founder of Cure VCP Disease, Inc. and with Dr. Chris Weihl, a professor of Neurology at Washington University School of Medicine in St. Louis.  VCP disease is a complex degenerative disorder that involves multiple aspects ranging from muscle fatigue to dementia.  In this discussion, you'll learn about current research, the role and impacts patients have on therapy development, and get to hear from two of the men fighting to raise awareness.  Enjoy!  

    • 41 min
    Episode 17 - The National Alliance on Mental Illness (NAMI)

    Episode 17 - The National Alliance on Mental Illness (NAMI)

    In this episode, Alyssa and Polly interviewed Wendy Giebink and Mallory Kloucek from the South Dakota chapter of NAMI, the National Alliance on Mental Illness.  While not often discussed, mental illness and rare disease may go hand in hand - especially in cases of depression and anxiety.  Here, Wendy and Mallory discuss the free programming offered by NAMI to provide education and counseling to those living with mental illness.  Hope comes through talking about struggles, and out of hope comes healing.  We hope you enjoy!

    • 30 min

Customer Reviews

5.0 out of 5
6 Ratings

6 Ratings

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