Patient Registry Tutorial Video Series

Patient Registry Video Tutorials

In Memory of PJ: Walking for a Cure

In Memory of PJ: Walking for a Cure

FSR supporter and Patient Ambassador Mary McGonagle is currently leading the way for Team K.I.S.S. virtual walks and fundraising efforts. Her walk in memory of her husband, PJ McGonagle, already has nearly 30 people registered, with more than two months until the walk date. We asked Mary to share her story with us, and this…

Updates on Penn Med’s Sarc App

Updates on Penn Med’s Sarc App

As we announced earlier this month, Penn Medicine launched the first ever Apple Researchkit app for sarcoidosis patients. Spearheaded by Dr. Misha Rosenbach, a member of FSR’s Scientific Advisory Board, the app aims to not only provide patients across the country (and hopefully globe!) with instant access to disease-specific resources on their phones, but also…

Sarcoidosis Experts in Dallas!

Sarcoidosis Experts in Dallas!

Join FSR and sarcoidosis experts for the Dallas Sarcoidosis Patient Conference. Presenters include: Dr. Bob Baughman, Pulmonologist – University of Cincinnati Dr. Connie Hsia, Pulmonologist – University of Texas Southwestern Dr. Edward Miller, Cardiologist – Yale University We hope to see you there! Learn more and register now Registration will be available the day of…

Health Insurance 101: Affording Pricey Prescriptions

Health Insurance 101: Affording Pricey Prescriptions

  Health insurance can be complicated, especially if you have a rare or chronic disease. Figuring out if and how you can see a certain specialist or how to afford expensive drug therapies can be exhausting,and understanding insurance lingo can feel like learning a different language. Luckily, there are resources out there that can help rare…

Online Support Community Inspire Hits 1 Million Members!

Online Support Community Inspire Hits 1 Million Members!

FSR’s partner Inspire, which serves as the platform for our online support group- “Stop Sarcoidosis”-  has hit 1 million members! Inspire provides a space for online support communities that allow patients to connect with others like them, regardless of geography. While attending an in-person support group meeting is always a good idea, this is not…

Share Your Story, Protect Your Healthcare Coverage

Share Your Story, Protect Your Healthcare Coverage

The National Organization for Rare Disorders is starting a patient-driven campaign to highlight the significant impact that the Affordable Care Act has had on patients with rare and chronic diseases. Some noticeable changes for these patients was prohibiting discrimination against patients with pre-existing conditions, as well as the eliminating the lifetime and annual caps on…

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