Patient-Care Advocacy
CHANGING THE WAY HEALTHCARE UNDERSTANDS EDS
Professional Dissemination
At the Norris Lab, alongside patients and advocates outside our lab, we are working to improve care for those with Ehlers-Danlos Syndrome (EDS). Together, we’re raising awareness by sharing experiences with healthcare professionals, advocating for EDS education in medical schools, and highlighting the need for faster diagnoses and better treatments.
Operation Upright
Unveiling the Upright MRI Machine at MUSC
Norris lab member Sydney Severance recently raised $1.2 million to bring an upright MRI machine to MUSC. Her efforts to raise awareness of and success in filling this need have not only enhanced the diagnostic capabilities of our institution but have also demonstrated the profound impact that dedicated individuals can have on improving healthcare access and outcomes for our patients.
“Physicians can do amazing things if they have the right tools.That’s what this was always about - getting these physicians the right tools to diagnose patients like me.”
--Sydney Severance
Congratulations to former Norris Lab Member Sydney Severance for her outstanding dedication to EDS advocacy and awareness!
Advocating for Improved Healthcare Curriculum
The Norris lab has partnered with MUSC to change medical school education! We recognize that prioritizing EDS education in medical schools and other healthcare institutions is a foundational step toward better recognition, diagnosis, and management of EDS. By working to bring up-to-date understandings of EDS to lectures, text books, and licensing exams, we hope to equip healthcare professionals with the knowledge they need to properly diagnose and care for patients with EDS.
NIH Webinar
In the fall of 2023, Dr. Cortney Gensemer, Dr. Sunil Patel, and Dr. Chip Norris were invited to present a webinar to all 27 institutes of the NIH on EDS. This presentation focused on our patient-physician-researcher approach to our work and the need for additional funding for EDS research and care. Following productive discussions with the NIH, several institutes have now prioritized EDS among their top research initiatives. This prioritization greatly facilitates the grant application process for scientists and clinicians focusing on EDS, enhancing their likelihood of securing funding. Notably, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is one of the institutes that has recognized the importance of EDS research.