POS1498-PARE LAUNCHING A NEW RELAPSING POLYCHONDRITIS (“RP”) PROGRAM

Background: In 2011, I was diagnosed with relapsing polychondritis (“RP”), a debilitating and sometimes fatal rheumatic disease that is characterized by inflammation of cartilage other tissues. The affects multiple organs, particularly cartilaginous structures such as the ears, nose, airways, joints well eyes, skin, heart valves brain. cause RP remains unknown there currently no cure for disease. As patient, had opportunity to be evaluated an incredible team multidisciplinary expert medical professionals. While interacting these experts, it evident were tremendous unmet needs in areas diagnosis treatments. retired Registered Nurse, clear targeted research initiatives would required combat RP. Objectives: After diagnosis, realized could focus on my specific case or more broadly help others. decided live life purpose helping Methods: fighting RP, met many highly skilled, collaborative scientists, especially at annual gatherings rheumatology 2017 San Diego, participated study group received response from participating clinicians, clinical basic scientist researchers, patients, patient advocacy groups. 2018 Chicago, helped organize Foundation’s reception, co-hosted event University Michigan Division Rheumatology, podcast news source dedicated field, facilitated two exhibitor booths prominent conference. 2019 Atlanta, investigator meeting, which provided update classification criteria project, introduced new project modify activity index, summarized RP-related projects. With knowledge gleaned sessions, husband collaborated Foundation provide substantial gift 2020 establish Penn Fund, will support unique partnership between Pennsylvania National Institutes Health sponsored Vasculitis Clinical Research Consortium. Results: Living patients continues improve quality life. It affords me ability excited about extraordinary advances care cutting-edge research. Participating conferences has exceptional opportunities learn collaborate skilled scientists. Further, able build relationships played key role launch Program. This program allow researchers pursue important projects, including development world-class referral center examine impact microbiome activity. Additionally, have subspecialties coordinated patient-centered manner. Conclusion: Foundation, Pennsylvania, Consortium (VCRC) Created Powerhouse Healthcare Coalition. significantly years come. Disclosure Interests: None declared