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Relapsing Polychondritis Foundation Announces a Powerhouse Healthcare Coalition with the University of Pennsylvania and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC)

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 Peter A. Merkel, MD, MPH, Chief, Division of Rheumatology at the Perelman School of Medicine at the 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 Shubhasree Banerjee, MD, 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 that is 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 www.RaceforRP.org or www.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.

Increasing relapsing polychondritis awareness and the Race for RP while cycling in Michigan.

Comments(3)

  1. REPLY
    Rachel Wollan says

    What a blessing this foundation is to us all! Your hard work behind the scenes and publicity gives us hope for the future and fuel for today.

  2. REPLY
    Dr. N.M. D.Hasan. M.D., D.I.H., says

    An important and much needed avenue for relief to patients all over the world.

  3. REPLY
    Kevin Fritts says

    As an RP patient and a patient of Penn Rhuematology I look forward to helping in the research and studies in anyway possible. As my rheumatologist is already in touch with Dr Ferrada of NIH I receive excellent care and look forward to the day a cure is found.

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