Doug and I me with Senator John Thune today to discuss sport for Rare Disease Legislation. We were representing Myositis Support and Understanding. #RareDC2020
As part of Rare Disease Legislative Advocates we met with Rep. Dusty Johnson today to ask him to support increased funding for FDA orphan drug clinical trials and disease natural histories. Doug and I were representing Myositis Support and Understanding. #RareDC2020
Doug and I are in the far right in the 1st and 2nd row. We are here representing Myositis Support and Understanding and to encourage South Dakota legislators to support rare disease legislation.
#RareDC2020 advocates ready to share their stories during tomorrow’s Capitol Hill Meetings! ADVOCATES! Remember to share your rare experience throughout this week using #RareDC2020 for a chance to win an $800 travel stipend for #raredc2021#EveryVoiceMatters 🙌 @HorizonNews