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Relapsing Polychondritis Patients, Advocates, and Researchers Emphasize Awareness, Partnership, and Collaboration with Exhibits on Rare Disease Day 2022 at the National Institutes of Health

New York – March 17, 2022 – This information is from the Relapsing Polychondritis Foundation Inc. (RP Foundation) with Race for RP and is not sponsored by, nor a part of, the National Institutes of Health.

The National Institutes of Health (NIH) Clinical Center held its annual event, Rare Disease Day at the NIH, on February 28, 2022. The virtual event, co-sponsored by the National Center for Advancing Translational Sciences (NCATS), aims to raise rare disease awareness, spotlight those impacted by rare diseases, and NIH collaborations that advance research for new treatments.

This year’s Rare Disease Day exhibits supported by the Relapsing Polychondritis Foundation included presentations by patients, advocates, and researchers.

Denise Stefanie’s poster exhibit, All In – A Powerful Anthem for Anyone Facing a Challenge, Especially Patients Diagnosed with Relapsing Polychondritis (RP), highlighted the singer, songwriter, and producer’s powerful song, “All In.”  Written, composed, and performed in support of Race for RP and the RP Foundation, Stefanie’s song raised awareness and helped to advance research for the rare autoimmune disease.

RP patient and advocate Dan Smith’s exhibit, Collaborative Advocacy Helps Me and Other Patients with Relapsing Polychondritis, shared a video of Smith speaking about the growing awareness for this rare disease and how the collaboration between Race for RP and motorsports is resulting in more research and greater hope for those impacted by RP.

Fighting Health-Related Misinformation Using Social Media, an exhibit poster and video presented by RP patient and support group moderator Susie Ratledge, underlined the important role of evidence-based science and information evaluation by health professionals for rare disease patients.

The RP Foundation shared two exhibits outlining different ways in which the foundation is driving awareness and accelerating research. One featured Dr. Peter A. Merkel, Chief of Rheumatology at the University of Pennsylvania, discussing the Penn RP Program, established and supported by the RP Foundation, and its partnership with the Vasculitis Clinical Research Consortium with the goal of bringing new therapies for better RP treatment through international collaboration.

In Race for RP – Driving for Hope, patients shared their experiences and challenges with RP while motorsports partners highlighted the partnerships built with organizations like Ferrari Challenge North America to raise funds for research, including for the Penn RP Program.

The Michael & Rosalie Linn Fund presented an AUTOimmunity Racing video featuring Drs. Joseph Ahearn and Susan Manzi of the Allegheny Health Network Autoimmunity Institute who spoke about the importance of advocacy and support for research, awareness, and quality care for those affected by autoimmune diseases, including RP.

With their participation in Rare Disease Day at NIH 2022, the RP Foundation and its partners continue to demonstrate their commitment to helping RP and autoimmune patients by emphasizing the need for greater awareness of rare diseases like RP, collaborations that advance research and development of diagnostics and therapeutics, and for open communication in the rare disease community at all levels.

More information about Rare Disease Day at NIH 2022 can be found here.

For more information about relapsing polychondritis, the RP Foundation, and the Race for RP, please visit https://www.polychondritis.org and https://raceforrp.org/. For all general and media inquiries, please contact David Bammert at (906) 869-3962 or dbammert@polychondritis.org.

About the Relapsing Polychondritis Foundation Inc. The Relapsing Polychondritis Foundation Inc. is a 501(c)(3) non-profit organization which strives to raise awareness and educate the public, as well as represent its patients to the global medical community and support medical research toward a cure.

About Race for RP Race for RP supports research, awareness programs, and care, for those affected by relapsing polychondritis and related diseases. RP is a painful, debilitating, and sometimes fatal autoimmune disease in which the immune system misfires, turning on the patient’s cartilage. For more information about Race for RP, please visit the organization’s website.

 

Media Contacts:
Company Name: Relapsing Polychondritis Foundation
Name:  David Bammert
Phone: (906) 869-3962
Email Address: Send Email
Website: https://www.polychondritis.org