Patient Registry Tutorial Video Series

Patient Registry Video Tutorials

We’re a NORD Member Organization!

We’re a NORD Member Organization!

We are excited to announce that FSR is now a member of the National Organization for Rare Disorders, or also known as NORD. Our membership acceptance from NORD will allow us many new resources and opportunities in the rare disease space. NORD has been helping patients, their families, advocate organizations and medical professionals understand and…

New App for Sarcoidosis Patients

New App for Sarcoidosis Patients

FSR is excited to have recently collaborated with University of Pennsylvania Medicine to provide resources for a new phone app developed for sarcoidosis patients. The app allows patients to track their symptoms and other quality of life measures. The app will also provide links and helpful resources such as physician recommendations for patients based on their…

Register for Phoenix!

Register for Phoenix!

Join us in sunny Phoenix, Arizona for our first patient conference of 2017! With presentations from Dr. Holli Horak from University of Arizona, Dr. Joe “Skip” Garcia from the University of Arizona, and Dr. Ken Knox of the University of Arizona. University of Arizona College of Medicine – Phoenix** Health Sciences Education Building Lecture Hall C104 435…

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…

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