FSR is a proud member of the National Organization for Rare Disorders, or NORD. Our friends at NORD are hosting an informational webinar about rare disease patients and the COVID-19 pandemic.A Rare Response: Addressing the Covid 19 PandemicTuesday, March 31, 20202:00...
FSR is excited to once again be partnering with our friends at the American Lung Association for Sarcoidosis Awareness Month this April! This year, our partnership will extend to ALA’s Better Breathers Clubs, which are support groups for patients and caregivers...
Rare disease patients find out soon after a diagnosis that they’ll have to learn advocate for themselves- in the doctors office, to insurance companies, and even to the government. Unfortunately, rare diseases are still often overlooked in legislation, even though...
Written by Margot Hahn Communications Intern At FSR, we aim to find avenues that connect sarcoidosis patients across the United States and abroad. People living with sarcoidosis are no stranger to the degree of unknown information about the disease and its effects....
Our partners at NORD recently launched a new initiative called RareInsights: RareInsights™ is a NORD® initiative to help expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families. Through this initiative,...
FSR is consistently working to ensure that researchers and physicians have plentiful opportunity to get involved in the world of sarcoidosis research. One such way is our recent $1M investment in our new Clinical and Research Fellowship Program. We also recently give...
One of FSR’s Awareness Campaign partners, the American Lung Association is hosting a webinar featuring FSR Scientific Advisory Board member Lisa Maier, MD MSPH from National Jewish Health, as well as sarcoidosis patient Tia Gray. This presentation will give a...
It’s Rare Disease Day! Each year, Rare Disease Day falls on the last day of February. This is a day for the rare disease community to come together and celebrate what we have in common as well as what makes us all, well….rare! We hope to raise awareness...