Oct 5, 2022
FSR is proud to announce the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign. The goals of this campaign are to increase representation of Black American sarcoidosis patients in clinical trials, raise awareness of...Topics: Advocacy/ News/ Patient Voices/ Research
Jul 18, 2022
On April 21, 2022, The Foundation for Sarcoidosis Research (FSR) hosted a virtual Patient Listening Session on Pulmonary Sarcoidosis with the US Food and Drug Administration (FDA). FDA Patient Listening Sessions are small, informal, non-regulatory, non-public...Topics: Advocacy/ Community Partners/ News/ Other/ Patient Voices
Jun 22, 2022
Foundation for Sarcoidosis Research (FSR) announces the launch of the FSR Global Sarcoidosis Clinic Alliance, a groundbreaking initiative that will have a worldwide impact on advancing sarcoidosis research and improving the lives of those with sarcoidosis through...Topics: Advocacy/ News/ Research
Jan 24, 2022
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...Topics: Advocacy/ News/ Patient Voices/ Take Action
Nov 3, 2021
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...Topics: Advocacy/ Community Partners/ News
Sep 15, 2021
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...Topics: Advocacy/ Community Partners/ Living with Sarcoidosis/ Patient Voices
Jul 19, 2021
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...Topics: Advocacy/ Living with Sarcoidosis/ News/ Other/ Patient Voices
Mar 2, 2021
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...Topics: Advocacy
