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
