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?
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...
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...
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...
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...
UCSF Sarcoidosis Studies are Recruiting! San Francisco based studies are looking for people diagnosed with sarcoidosis in or near the bay area to join us in learning more about this disease. All studies are currently observational (no interventions), looking closely...
Time is running out for an important piece of legislation that has recently stalled in the Senate. The 21st Century Cures Act was passed by the House in July 2015, but is now at risk of expiring before the Senate can approve it. A large portion of the act focuses on...
Guest post written by Sue Bhalla As the latest industry statistics show, an estimated 90% of drugs that reach the testing phase of clinical trials never end up marking the finish line and attaining FDA approval. This leaves potentially useful drug therapies far from...
We are excited to announce that Ginger Spitzer, Executive Director for the Foundation for Sarcoidosis Research, will present a session at the 44th Annual NBNA Institute and Conference. FSR recognizes sarcoidosis to be a debilitating disease for which there is limited...
Right now, it’s almost impossible to go a full day without hearing or reading about Pokemon Go. Nintendo has created a big buzz by bringing the 90’s game back in the form of a phone app. A lot of media attention focuses on negative stories: distracted players are...
