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...
Dear Pulmonary Sarcoidosis Patient, FSR is reaching out with our partner Transparency Life Sciences to ask if you would be interested in a future clinical trial of a new drug candidate for pulmonary sarcoidosis. This trial would test the drug Kiacta (eprodisate), an...
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...
September 11, 2001 is a date that Americans have vowed never to forget. Many people still bear the emotional and physical scars from the attack on the World Trade Center and the weeks of rescue and recovery—and years of rebuilding—that followed. People were injured,...
Shopping online is an easy way to get everything you need in one place. You can get virtually anything- clothes, books, movies, even groceries- all online and delivered right to your door. Now shopping online is an easy way to give to FSR too! Over 1,700 stores online...
Walkers are assembling in towns nationwide to raise funds and awareness for sarcoidosis research! What will YOU be doing on April 30th? If you can’t make it to the big K.I.S.S. 5K in Chicago, you can still #ShowYourPurple closer to home as a virtual walker....
We are heartbroken. We are mourning the loss of our dear friend Rick Passaglia, who lost his battle with sarcoidosis on Monday. Rick was not only a treasured friend of FSR, but he touched our hearts as a loyal supporter, dedicated volunteer and tireless advocate....
Global nonprofit Foundation for Sarcoidosis Research announced today that it will be attending the upcoming Rare Disease Week on Capitol Hill from February 23 -27. They will be joining the Rare Disease Legislative Advocates to learn about how they can advocate for...
The Foundation for Sarcoidosis Research announced they are entering their second year with FSR Sarcoidosis Patient Registry. The FSR Sarcoidosis Patient Registry was established in collaboration with National Institutes of Health (NIH) to provide critical data for...
