Romy (Row-me) Braunstein’s journey with Lambert-Eaton myasthenic syndrome (LEMS) disease is driving her to be a pioneer for patient advocacy. She wants to educate everyone about invisible symptoms in rare diseases. Romy's love for music inspired her to write a rap song about her journey. You can find Romy on Instagram at @romyonrarediseasesymptoms, and to learn more about rare disease, check out rarediseases.org.
Click here to listen: https://podcasters.spotify.com/pod/show/the-patients-program/episodes/Rare-Disease-Discussion-with-Romy-Braunstein-e225usb/a-a9l9nsf or search and subscribe to "The Bridge" wherever you like to listen to podcasts.
"The Bridge" is hosted by Rodney Elliott. The PATIENTS Program is the bridge between the community and researchers. The PATIENTS Program created this partnership to help researchers listen to the community’s voice to build a bridge to an effective learning health care community.