Category: Community Partners

#ShowYourRare for Rare Disease Day!

#ShowYourRare for Rare Disease Day!

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...
Our Online Support Group Hit 40,000 Members!

Our Online Support Group Hit 40,000 Members!

Our online support community has continued to grow over the past few years, reaching 40,000 online members this month! The Stop Sarcoidosis support community is hosted on the platform Inspire, which provides a space for online support communities that allow patients...
FSR Represented at ATS Public Advisory Roundtable

FSR Represented at ATS Public Advisory Roundtable

FSR Executive Director Ginger Spitzer attended the 2017 ATS Public Advisory Roundtable Planning Meeting on Nov 17-18 in Miami. Our membership in PAR allows FSR to continue our work toward advocating for patients and ensuring the patient perspective into clinical and...
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...
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...