Category: Take Action

We’re Painting the Map Purple!

We’re Painting the Map Purple!

This mission to find a cure is so much bigger than one individual but in the end all it takes is one action by one person at one time to change everything. Deborah, middle, surrounded by her supportive loved ones. FSR’s Patient Ambassador Deborah Rice has gone above...
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...
Get Featured on FSR’s Social Media for Awareness Month!

Get Featured on FSR’s Social Media for Awareness Month!

April is Sarcoidosis Awareness Month- help us spread the word! Submit a picture of yourself with a sign about awareness month and you could be featured on FSR’s social media during the month of April. Print one of the signs from below, or use the empty template...

Join the Team: Ideas for Fundraising

As a small nonprofit, FSR relies on independent fundraising from generous supporters like you. Independent events have consistently contributed toward FSR’s mission to fund critical sarcoidosis research projects and programs that improve education and care for sarc...
21st Century Cures Passed…What Comes Next?

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...
FSR Recognizes 9/11 Heroes

FSR Recognizes 9/11 Heroes

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,...