Category: Research

Rare Disease Research Consortium Announces Ambitious Goals

FSR is excited to share some breaking news from the world of rare disease research that could have a huge impact on the future of diagnosing and treating rare diseases worldwide. The International Rare Diseases Research Consortium (IRDiRC) has released an ambitious...
Can Tracking Fitness Help Sarcoidosis Patients?

Can Tracking Fitness Help Sarcoidosis Patients?

Tracking your fitness may be a way to help manage symptoms and side effects for sarcoidosis patients. As many sarc warriors know, it can be extremely difficult to stay active when you’re living with sarc. Between the chronic pain, fatigue, shortness of breath,...
Do You Know About Your Health Data?

Do You Know About Your Health Data?

Did you know, you have access to all of your health data online? 41% of Americans have never taken advantage of their ability to see this information, and 27% reported not even being aware they had the right to! We invite you to learn more about FasterCures’ new...
Taking Steps Towards A Cure

Taking Steps Towards A Cure

If you were one of over 500 people worldwide who joined FSR for our annual K.I.S.S. 5K and virtual walks, you are part of the movement that will put sarcoidosis on the map – the same map as other big name diseases with national walk events that bring in millions...
Healthcare Innovation Under the New Administration

Healthcare Innovation Under the New Administration

With the upcoming inauguration of the 45th President of the United States, the country is preparing for big changes, especially when it comes to healthcare. The potential repeal of the Affordable Care Act threatens some provisions for chronic and rare disease patients. For example, the ACA prohibited insurance companies from setting lifetime caps on medical expenses …

New App for Sarcoidosis Patients

New App for Sarcoidosis Patients

FSR is proud to have partnered with the University of Pennsylvania and Penn Medicine to help share a new mobile app for sarcoidosis patients which allows patients to track their symptoms, disease activity and impact, and other quality of life measures, using their...
FSR Well-Represented at SCOPE 2017

FSR Well-Represented at SCOPE 2017

FSR’s Ginger Spitzer will be presenting at the 8th annual Summit for Clinical Ops Executives, or SCOPE in Miami, FL later this month. SCOPE is a 3-day summit of conferences, workshops and symposiums, all dedicated to productive and in-depth conversations the...
Baltimore Clinical Trial for Neurosarcoidosis Patients

Baltimore Clinical Trial for Neurosarcoidosis Patients

For all neurosarcoidosis patients, a clinical trial in the Baltimore area entitled, “Clinical Biomarkers of Disease Activity and Treatment Response in Patients with CNS Sarcoidosis Treated with H.P. Acthar Gel”, is now open for recruitment specifically to patients in...