For Rare Disease Week on Capitol Hill, FSR co-cohosted a congressional briefing on the importance of recognizing April as Sarcoidosis Awareness Month. Sponsored by New York Representative Lee Zeldin’s office, the briefing had a great turnout, with many offices sending their health aids and staff to attend. FSR’s Kelli Beyer started the briefing, followed by three of FSR’s patient ambassadors. Ambassador Mary spoke about the sudden loss of her husband to cardiac sarcoidosis and the importance of early detection through screening. Ambassador Raul shared his experience as a 9/11 first responder and the World Trade Center Health Monitoring Program. Ambassador Frank shared his four year odyssey with a misdiagnosis of lung cancer before doctors found he had sarcoidosis.
Staffers were very receptive to the patients’ stories, and many asked about more than just a resolution to designate April as National Sarcoidosis Awareness Month. Many wanted to know what was next for rare disease patients and how the 21st Century Cures Act has affected our patient population. They were told more about legislation like the OPEN Act and how it could greatly benefit the sarcoidosis community.
As Frank says at the end of the video below, recognizing April as Sarcoidosis Awareness Month would acknowledge patients’ voices and let them know that they’re being heard. This resolution could also open the door for new legislative action and advocacy surrounding sarcoidosis and rare diseases. Check out our map of the states that have a proclamation passed or pending for 2017’s Awareness Month.