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Category: News

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 patients. For example, the ACA prohibited insurance companies from setting lifetime caps on medical expenses …

New App for Sarcoidosis Patients

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 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...
Current Health Policy Legislation

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?

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

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...
New Locations in Clinical Trial for PH

New Locations in Clinical Trial for PH

As a patient, you are key to advancing research! If you have- or think you might have- pulmonary hypertension along with your sarcoid, you may qualify for a nation-wide clinical trial where you will be financially compensated.  Now with new clinical trial sites...
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