Relapsing Polychondritis Foundation Announces a Powerhouse Healthcare Coalition

Share Article

A New Partnership with University of Pennsylvania and the Vasculitis Clinical Research Consortium

News Image

Neil Langberg & Nancy Linn drive global RP awareness and accelerate research.

It is especially gratifying to be working with the internationally-recognized center of excellence at the University of Pennsylvania and the world-renowned leaders in the conduct of clinical and translational research

The Relapsing Polychondritis (RP) Foundation has announced a generous gift to establish the Penn Relapsing Polychondritis Fund, which will support a unique partnership between the University of Pennsylvania RP Program and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC).

With support from Race for RP, Nancy Linn and Neil Langberg, the Penn Relapsing Polychondritis Fund will expand these exceptional programs that will improve care for patients with RP. RP is an understudied, underdiagnosed, and undertreated systemic inflammatory disease that causes the body to attack its own cartilage and can prove fatal if left untreated.

“The absence of any clinical trials or other high-quality clinical research in relapsing polychondritis has greatly hampered advancing therapies and outcomes for patients with this rare disease,” says Dr. Peter A. Merkel, MD, MPH, Chief, Division of Rheumatology at University of Pennsylvania and principal investigator of the VCRC.

“As a patient, I am extremely pleased the Foundation has implemented its plan to support research to advance a cure for relapsing polychondritis,” said Nancy Linn, Chair of the Relapsing Polychondritis Foundation. She added, “It is especially gratifying to be working with the internationally-recognized center of excellence at the University of Pennsylvania and the world-renowned leaders in the conduct of clinical and translational research.”

“The Penn RP Program represents the RP Foundation’s unwavering commitment to powerful research initiatives that improve patient care and relentlessly advance the path to a cure,” said David Bammert, President of the Relapsing Polychondritis Foundation. “It also provides our philanthropic partners with the unprecedented opportunity to support substantive RP research programs as well as the Foundation’s awareness and educational initiatives.”

The Penn RP 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. Eligible patients will be enrolled in a longitudinal study using the existing infrastructure of the VCRC, which is comprised of an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research, with participating centers around the United States and Canada.

At the University of Pennsylvania, patients with RP will have the opportunity to be evaluated by multiple subspecialties in a coordinated patient-centered manner. Along with Dr. Merkel, patient evaluations will be led by Dr. Shubhasree Banerjee, a faculty member in the Penn Division of Rheumatology who received prior advanced training in the evaluation and management of RP.

#     #     #

About Relapsing Polychondritis

Relapsing polychondritis (RP) is a debilitating and sometimes fatal systemic inflammatory disease characterized by recurrent inflammation of cartilage and other tissues throughout the body. 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 is unknown and there is no cure for RP. For more information, visit https://bit.ly/RP_Poster.

About Relapsing Polychondritis Foundation

The RP Foundation's purpose is to facilitate education, awareness and research initiatives that improve the quality of life for patients with RP. For more information, visit https://www.polychondritis.org.

About Race for RP

Race for RP supports research and awareness programs for relapsing polychondritis and related diseases. For more information, visit RaceforRP.org or Facebook.com/raceforrp/. Follow Race for RP on Instagram, @RaceforRP.

About the Penn Vasculitis Center and the Vasculitis Clinical Research Consortium        

Under the direction of Dr. Peter A. Merkel, the Penn Vasculitis Center is an internationally recognized center of excellence for the care and management of patients with all forms of vasculitis. The Center conducts cutting-edge clinical and translational research in vasculitis. The Center also hosts the Vasculitis Clinical Research Consortium, the world’s foremost clinical research infrastructure for vasculitis, and a founding member of the NIH Rare Diseases Clinical Research Network, an integrated group of academic medical centers and patient support organizations dedicated to conducting clinical research. The VCRC conducts clinical trials, large observational studies, biomarker and genomic investigations, epidemiologic analyses, and other forms of research in over 100 centers worldwide.

Share article on social media or email:

View article via:

Pdf Print

Contact Author

David Bammert
@RaceForRP
Follow >
Race for RP - "Relapsing Polychondritis"
Like >
Visit website

Media