Category: News
FSR Funds Six ATS PAR Travel Scholarships
The Foundation for Sarcoidosis Research is committed to fostering the growth of medical professionals who are interested in research and clinical work related to sarcoidosis, inflammatory diseases, and interstitial lung disease. The six recipients of our ATS PAR...
April might be ending…
..but our fight isn’t over. It may be the end of Sarcoidosis Awareness Month, but unfortunately patients and their loved ones will continue to face this devastating disease every single day of the year. Thank you to all who joined us in raising awareness this...
FSR Ambassador at Senate Press Conference
U.S. Senate Democratic Leader Charles E. Schumer, with Kerry in the background Senator Debbie Stabenow (MI) FSR Patient Ambassador Kerry was in Washington, D.C. last month attending a press conference held by Senate Democrats. The press conference focused on pending...
FSR Speaks to Congress about Sarcoidosis Awareness
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...
Current Health Policy Legislation
The release of a draft of the American Health Care Act has had everyone buzzing the past few weeks. Not only does this signal the impending repeal of the Affordable Care Act, which has been promised since November 8th of last year, but it is also the first of many big...
Healthcare Innovation Under the New Administration
With the upcoming inauguration of the 45th President of the United States, the country is preparing for big changes, especially when it comes to healthcare. The potential repeal of the Affordable Care Act threatens some provisions for chronic and rare disease patients. For example, the ACA prohibited insurance companies from setting lifetime caps on medical expenses …
New App for Sarcoidosis Patients
FSR is proud to have partnered with the University of Pennsylvania and Penn Medicine to help share a new mobile app for sarcoidosis patients which allows patients to track their symptoms, disease activity and impact, and other quality of life measures, using their...
FSR Well-Represented at SCOPE 2017
FSR’s Ginger Spitzer will be presenting at the 8th annual Summit for Clinical Ops Executives, or SCOPE in Miami, FL later this month. SCOPE is a 3-day summit of conferences, workshops and symposiums, all dedicated to productive and in-depth conversations the...
21st Century Cures Passed…What Comes Next?
The final version of the 21st Century Cures Act was signed into law by Obama on Dec. 13, 2016. The bill has 17 titles with roughly 300 subsections, addressing a wide variety of current needs in health and medicine. The campaign #CuresNow helped build the momentum that got the bill passed, but how soon can patients really expect results- especially when there are almost 6,500 rare diseases with no known cure?