Podcasts Culture Philadelphia Community Podcast What's Going On - What to do If You have a Rare Disease and PA Virtual Charter School

What's Going On - What to do If You have a Rare Disease and PA Virtual Charter School

Published: June 21, 2019, 7:34 p.m.

b'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/

Families look for the best fit for their kids when it comes to K-12 schools. About 33K school age children in PA have elected to attend a cyber school. We\\u2019ll take a look at why students choose cyber with folks who\\u2019ll also address some recent criticism of online schooling. Joining me are Pennsylvania Virtual Charter School\\u2019s Doug Wessels, Director of Public Affairs and Accountability, and Laura Afshari, current PA Virtual teacher.
https://www.pavcsk12.org/'