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.
Registered dietician Dr. Karen Dolins and nurse Sandy Bulcher share their experiences raising children with Classic Maple Syrup Urine Disease in an interview with Polly, offering insights into managing the condition.
30 Jan 2025
Episode 50 - NUS1 Foundation
On this episode of CoRDS Cast you will hear from Andrea Johnson and Carissa Carman who are not only the co-founders of the NUS1 Foundation, but also amazing parents to their sons who are diagnosed with NUS1.
We also get the pleasure of speaking with Richard Steet who is the Director of Research at the Greenwood Genetic Center and Heather Flanagan-Steet who is the Associate Director of Research at the Greenwood Genetic Center. Richard and Heather are both heavily involved with NUS1 research and with the help of Andrea and Carissa, come together to make an impact with the NUS1 community.
For more information, please visit: https://www.nus1foundation.org/
Enjoy!
1 Aug 2024
Episode 49 - BFLS Inc.
Tune in as Polly sits down with Kearstyn Shaw and Dr. David Picketts with BFLS Incorporated.
Kearstyn's son was diagnosed with BFLS in 2021. Kearstyn has been a strong advocate for her son and her community since the diagnosis.
Dr. David Picketts is a researcher at the Ottawa Hospital Research Institute. His research is focused on understanding the role of epigenetic regulators in brain development and neurodevelopmental disorders (NDDs). Dr. Picketts works closely with Kearstyn to help find a cure and treatments for BFLS.
For more information, you can visit: www.bflsinc.com
Enjoy!
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
8 ratings
Podcast Authority Score: 28 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
25
Social presence
0
YouTube
0
Engagement
76
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