48 episodes
CoRDS Cast Sanford CoRDS
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- Health & Fitness
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5.0 • 8 Ratings
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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.
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LEMS Family Association
Join us on a special podcast with Price Wooldridge as he discusses his journey navigating Lambert Eaton Syndrome (LEMS). Price is not only a strong advocate for the LEMS Family Association, but is a patient himself. Learn about his amazing journey to finding answers and living with LEMS.
To learn more about LEMS please visit: lemsfamily.org
Enjoy! -
Episode 45 - HODA
On this episode of CoRDS Cast, Alyssa sits down with Becky from HODA (Hypertrophic Olivary Degeneration Association). Becky is an amazing advocate in the rare disease space as her sister is diagnosed with HOD. Tune in to listen to her story.
To learn more information on HOD, please visit: hodassoc.org -
CoRDS Recap and Updates
On this episode of CoRDS Cast, Ben and Polly sit down to discuss the recent updates to the CoRDS registry platform and our plans for future improvements. Enjoy!
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Recruiting to Patient Registries
On this exciting episode of CoRDS Cast, Alyssa sits down with Sophia Zilber from the Cure Mito Foundation and Allison Peck from Cure VCP Inc. Sophia and Allison are both very strong advocates for their foundation and have done an amazing job recruiting to their registries. Tune in to learn how they have built their registries along with different strategies to make it successful.
Enjoy!
Contact information:
Sophia Zilber: email: sophia@curemito.org Website: https://www.curemito.org/
Allison Peck: email: allison@curevcp.org Website: https://www.curevcp.org/ -
Episode 42- Kennedy's Disease Association
On this episode of CoRDS Cast, Alyssa sits down with Terry Thompson, Jameson Parker, Ed Meyertholen, and Chris Grunseich with the Kennedy’s Disease Association. Kennedy’s Disease is a defect in the ‘X’ Chromosome, and it makes testosterone almost a poison to the body. The disease is Spinal Bulbar Muscular Atrophy; more commonly known as Kennedy's Disease. Please tune in to listen to each heart felt story, and why they are each involved in rare disease research today. If you would like more information on Kennedy's Disease or have any questions, please visit: https://www.kennedysdisease.org/
Enjoy! -
Episode 41 - Cure Mito Foundation
On this month's episode of CoRDS Cast, Alyssa sits down with Kasey Woleben who is one of the founders of the Cure Mito Foundation, and Sophia Zilber who is the board member, patient registry director.
Kasey and her family have started several non-profits to save their son, Will, and other children facing mitochondrial diseases like SURF1 Leigh syndrome.
Sophia has over 15 years of experience in pharmaceutical industry and is volunteering her expertise to help the rare disease community, in memory of her daughter, Miriam.
In mitochondrial disorders, the mitochondria’s ability to convert food and oxygen into energy is impaired because of a genetic mutation in the DNA. There are over 100 different mutations that can cause this condition.
You will not want to miss the incredible story of these two families fighting to find a cure.
To learn more about the Cure Mito Foundation, please visit: https://www.curemito.org/
Customer Reviews
Suggestion
Hey guys! I’d love to hear from someone related to Wiedemann-Steiner Syndrome. ;-)