Episode 38 - Myhre Syndrome Foundation

https://is1-ssl.mzstatic.com/image/thumb/Podcasts126/v4/53/3f/61/533f61ff-b68f-3119-57e1-ba2f2144f9f8/mza_733265196109487755.jpg/600x600bb.jpg

CoRDS Cast

Sanford CoRDS

53 episodes

1 day ago

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.

Health & Fitness

RSS

All content for CoRDS Cast is the property of Sanford CoRDS and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Health & Fitness

https://d3t3ozftmdmh3i.cloudfront.net/production/podcast_uploaded_nologo400/774040/774040-1530902710518-052352f500653.jpg

Episode 38 - Myhre Syndrome Foundation

CoRDS Cast

18 minutes 22 seconds

3 years ago

Episode 38 - Myhre Syndrome Foundation

On this episode of CoRDS Cast, Alyssa sits down with Kathy Young who is a strong advocate for Myhre Syndrome and also has a daughter diagnosed with this condition. Kathy’s daughter was diagnosed with Myhre Syndrome seven years ago and at this time there was not an organization or group created for this condition. Being less than 200 diagnosed with this condition, Kathy started a Facebook group where she could connect with people diagnosed with Myhre Syndrome. Creating a Facebook group would later on help set up a Myhre clinic at Mass General Hospital.

Enjoy!