Relapsing Polychondritis Foundation

The RP Foundation’s goal is to facilitate awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP) and advance a cure for this disease.

The RP Foundation will achieve its goals by developing relationships (with donors and highly skilled, collaborative research scientists), participating in awareness and educational events, and funding research programs.

The RP Foundation has demonstrated its capabilities to develop relationships (with donors and highly skilled, collaborative research scientists), participate in awareness and educational events, and fund research programs.

2021 was an excellent year for the RP Foundation’s research endeavors. In February 2021, the RP Foundation gave another charitable gift to the Penn RP Center, which engages clinicians and researchers from the University of Pennsylvania and the NIH’s Vasculitis Clinical Research Consortium (VCRC). Despite obstacles posed by the COVID-19 pandemic, the Penn RP Center continued to evaluate and provide multi-disciplinary treatments to patients with RP.

In March 2021, the VCRC Longitudinal Study was launched and enrolled its first patient. Approved by the University of Pennsylvania’s Institutional Review Board in December 2020, this research will help elucidate the underlying mechanisms of RP, with the potential to uncover biomarkers for the development of targeted RP therapies. In June 2021, the study was posted on Clinicaltrials.gov. Since then, the Penn RP Center has begun acquiring specimens for a RP-focused biospecimen and tissue repository. As of November 2021, the VCRC collected 1,087 samples from 33 subjects, including DNA, serum, plasma, urine, and peripheral blood mononuclear cells.

The RP Foundation also supported an expanded VEXAS (vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic) Syndrome study, which helped to diagnose over 100 patients and led to the discovery of specific mutations that may predict the course and severity of the disease.

At the 2021 VCRC Vasculitis Investigators Meeting in January, Shubhasree Banerjee, MD, MBBS, presented on new developments from the Penn RP Center, progress that was made with the help of the RP Foundation. Over 130 clinicians and scientists representing five continents were encouraged to share RP-focused research ideas with scientists from Penn.

In June 2021, the RP Foundation authored a poster about the founding and launch of the Penn RP Program that was accepted for presentation by the European Alliance of Associations for Rheumatology (EULAR) 2021 Virtual Congress held in Paris. The poster told the story of how relationship-building among clinicians, researchers, patients, and advocates led to the establishment of a research initiative and partnership between the Penn RP Program and the NIH sponsored VCRC.

In November 2021, as a component of the Penn RP Program, the RP Foundation funded a study conducted by Dr. Banerjee and clinical scientists at the NIH. This study characterized the nasal manifestations of RP and was presented at the Annual Scientific Meeting of the American College of Rheumatology (ACR).

Also in November 2021, the RP Foundation sponsored two patient perspective posters that were accepted for presentation at the ACR Convergence.