Category: News

FSR Ambassador at Senate Press Conference

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

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

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

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...
New App for Sarcoidosis Patients

New App for Sarcoidosis Patients

FSR is proud to have provided resources to the University of Pennsylvania Medicine for a new phone app for sarcoidosis patients which allows patients to track their symptoms and other quality of life measures from their Apple device. The app will also provide links...
FSR Well-Represented at SCOPE 2017

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?

21st Century Cures Passed…What Comes Next?

21st Century Cures Becomes Law 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...
Patient Data: Unlocking the Future of Research

Patient Data: Unlocking the Future of Research

FSR’s Executive Director Ginger Spitzer recently attended the 2nd Annual CBI Patient Registry Summit in Philadelphia. The conference focused on the latest news about patient registries and their role in accelerating research. The ongoing FSR Sarcoidosis Patient...
Board of Directors Welcomes Jim Davis

Board of Directors Welcomes Jim Davis

We are excited to welcome Jim Davis to the FSR Board of Directors. Jim is the Executive Vice President of Advera Health Analytics, Inc. He has over 12 years of expertise in biopharma market research, intelligence, and data. FSR looks forward to the impact Jim can have...
Participate in #GivingTuesday today!

Participate in #GivingTuesday today!

What is Giving Tuesday? Giving Tuesday comes on the heels of the infamous Black Friday and other designated shopping days like “Small Business Saturday” and “Cyber Monday.” However, instead of focusing on buying things, Giving Tuesday is all about giving back! It’s an...