Act Now to Protect Drug Development. As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit for pharmaceutical companies. Most of the drugs in sarcoidosis are not FDA-approved for sarcoidosis, but are repurposed from...
We are proud to announce that they have been selected as an awardee for the Chan Zuckerberg Initiative (CZI) Rare As One Cycle 2 grant which will provide $600,000 to improve diagnostics and increase research in sarcoidosis. This work is part of CZI’s Rare...
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did the physicians who were then treating me. At an annual physical, at the age of 46, I mentioned that my knees were a bit sore after physical...
We are thrilled to announce the formation of our new FSR Patient Speakers’ Bureau! This bureau consists of 14 experienced and trained sarcoidosis patient advocates who will share their personal stories to advocate for FSR and raise awareness for...
Rare Disease Legislative Advocacy By Jim Kuhn, FSR Patient Advocate, FSR Patient Navigator, and FSR Patient Advisory Committee Member In February 2018, I did my first ever grass-roots lobbying, when my wife and I met with legislative aides of the Congressional...
