Podcasts Culture Philadelphia Community Podcast 3-31 What's Going On Run for Clean Air and Rare Disease Advocacy

3-31 What's Going On Run for Clean Air and Rare Disease Advocacy

Published: March 29, 2019, 9:39 p.m.

b'Loraine Ballard Morrill spoke with Katie Edwards, Social Media Director for the Clean Air Council about their upcoming Run for Clean Air on April 20th and was so inspired she signed up for the 5K!
https://cleanair.org/runforcleanair/

Romy Bronstein was a medical mystery. After a back operation Romy started feeling pretty terrible, was falling a lot and for a long while doctors had no idea what the problem was \\u2013then she was misdiagnosed. When Romy finally got her correct diagnosis it turns out she had a rare disease Lambert-Eaton myasthenic syndrome (LEMS) is a rare autoimmune disorder of the neuromuscular junction. Then she was told there was no cure. Loraine Ballard Morrill spoke with Romy about her journey that has led her to become an advocate for patients with rare disease.
https://globalgenes.org/
https://rarediseases.org/
https://www.patientslikeme.com/
https://clinicaltrials.gov/'