Patient Registry Tutorial Video Series

Patient Registry Video Tutorials

Mindfulness Webinar Video

Mindfulness Webinar Video

Last month, FSR co-hosted a webinar on mindfulness with Inspire and the Scleroderma Foundation. We know not everyone was able to take time out of their schedule to join, so we’re posting a recording below. Watch as Dr. Lesley Ann Saketkoo, associate professor of medicine at Tulane University’s Lung Center, discusses the how practicing daily mindfulness…

Growing the Movement: Team Aussie

Growing the Movement: Team Aussie

Steve McLeod, a sarc warrior and supporter of FSR, was recently featured in the Courier Mail, a daily newspaper in his hometown of Brisbane, Australia. Steve has neurosarcoidosis; he has lost his hearing and is unable to maintain his balance without the help of forearm crutches or a wheelchair. Despite the physical toll the disease…

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 planning and management of clinical trials. Spitzer’s presentation, Patient Access and Outreach: The Role of Disease…

Clinical Trial for Baltimore-Area Neurosarcoidosis Patients

Clinical Trial for Baltimore-Area Neurosarcoidosis Patients

For all neurosarcoidosis patients, a clinical trial 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 the Baltimore, MD area at the University of Maryland School of Medicine. The purpose of this study is to determine…

21st Century Cures Passed… What Comes Next?

21st Century Cures Passed… What Comes Next?

21st Century Cures Becomes Law The final version of the 21st Century Cures Act was signed into law by Obama on Dec. 13, 2016. The bill has 17 titles with roughly 300 subsections, addressing a wide variety of current needs in health and medicine. The campaign #CuresNow helped build the momentum that got the bill passed, but how…

Patient Data: Unlocking the Future of Research

Patient Data: Unlocking the Future of Research

FSR’s Executive Director Ginger Spitzer recently attended the 2nd Annual CBI Patient Registry Summit in Philadelphia. The conference focused on the latest news about patient registries and their role in accelerating research. The ongoing FSR Sarcoidosis Patient Registry closely aligns with what these experts say can make real progress in research. By collecting and organizing information on patient…

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