POS1498-PARE LAUNCHING A NEW RELAPSING POLYCHONDRITIS (“RP”) PROGRAM
Authors: N. Linn
Journal: Annals of the Rheumatic Diseases (2021)

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