FOR IMMEDIATE RELEASE
UPPER NYACK, NY (March 3, 2020) – CreakyJoints®, a Global Healthy Living Foundation patient community, is pleased to announce that president and co-founder, Seth Ginsberg, will be a panelist at the Inaugural Annual Stakeholder Roundtable hosted by the Frances Hamburger Institute (FHI) for Community Rheumatology on Friday, March 6, 2020. FHI is dedicated to supporting research to advance the real-world experience and outcomes of patients with rheumatic diseases in clinical practices across the United States. Inclusive of all the stakeholders who impact patient care, the Roundtable will inform the rheumatology community of FHI’s mission and solicit input from their FHI State of The Rheum assessment.
Representing the patient perspective, Mr. Ginsberg will speak about patient-centered outcomes research, pulling insights from the ArthritisPower Research Registry created by CreakyJoints, and barriers patients face accessing therapies and quality care.
“It’s an honor to participate in this Roundtable, particularly because FHI understands the value of including everyone who impacts patient care, ranging from providers and payers to those who influence health policy and develop diagnostics and treatments,” said Mr. Ginsberg. “I’m looking forward to hearing diverse perspectives and contributing to the improvement of precision approaches to individualized care for people living with serious and lifelong rheumatic diseases.”
“Moreover, I had the privilege of knowing Frances Hamburger before her tragic passing in March 2017. Her spirit and her focus on helping others will live on through the work of FHI, which CreakyJoints is honored to support.”
The Frances Hamburger Institute for Community Rheumatology is dedicated to carrying out initiatives that provide insights and raise awareness about improvements needed in payment and formulary policies, outcomes research, and treatment for individuals diagnosed with rheumatologic disorders. The Institute will fund patient-focused scientific, clinical, and health economic research related to rheumatic disease and the development of public awareness and physician education to improve access to the latest advances in diagnosis and treatment of patients with rheumatologic disorders.
CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.
As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with nearly 27,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness, and hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.