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Relapsing Polychondritis Foundation: Year in Review

Fueled by bold thinking, purposeful action, and inspiration, 2021 was a transformational year for patients with Relapsing Polychondritis (RP), the RP Foundation, and Race for RP.

Thanks to your generous support, we significantly improved patient care, fostered a greater understanding of RP and accelerated RP-related research. We are pleased to:

  • provide patients with access to a specialized team of multi-disciplinary clinicians at the nation’s only RP-focused medical center (founded by the RP Foundation in 2020), the Penn RP Center.
  • connect clinical scientists at the Penn RP Center and the NIH’s Vasculitis Clinical Research Consortium (VCRC) to harness the power of synergy and launch the VCRC Longitudinal RP-focused research study and RP-focused biobank and tissue repository.
  • support 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.
  • support Dr. Shubhasree Banerjee’s presentation at the VCRC Vasculitis Investigators Meeting, which was attended by a group of international scientists and highlighted the accomplishments taking place at the Penn RP Center.
  • partner with Race for RP and six internationally recognized motorsports teams to increase awareness of RP and related autoimmune diseases.

As we reflect on the RP-focused advancements that gained traction in 2021, we’re grateful for the commitment and support of the patients, clinicians, scientists, and partners who made this year extraordinary.  We also recognize the need to relentlessly build upon the robust research initiatives that we’ve supported, such as VEXAS Syndrome and RP-related autoimmune biorepositories, to maintain momentum, and more swiftly forge the path to a cure.

Help us drive the future of RP and autoimmune-related research by making a gift at give.polychondritis.org.  All gifts make a difference and have the potential to improve the life of someone you love, as well as provide hope to all of the patients and families we serve.

Thank you, in advance, for your incredible support and generosity.

2021 Accomplishments in Awareness, Research, Education:

Awareness

The Relapsing Polychondritis Foundation partnered with Race for RP and six internationally recognized motorsports teams in 2021. These teams and individual athletes used their significant platforms to promote the RP Foundation and increase awareness of this debilitating autoimmune disease.

In February, the RP Foundation hosted a patient-inspired fundraiser to foster a sense of community among patients and their families. The event featured bracelets hand-crafted by a patient with RP, worn to increase RP awareness.

In April, the RP Foundation was the featured medical charity in the Tampa Bay Medical Professionals Magazine. The article highlighted the RP Foundation and Race for RP’s mission to accelerate research for this understudied condition.

The RP Foundation also collaborated with the patients with relapsing polychondritis social network group on the RP Mask Project (May 2021) to help immunocompromised patients and their families acquire face masks during the COVID-19 pandemic.

In June, the RP Foundation partnered with singer, songwriter, and producer, Denise Stefanie, who released a new single, “All In,” in support of the RP Foundation and Race for RP. The powerful piece, written, composed, and performed by Stefanie, sought to increase the public conversation around RP.

GuideStar awarded the RP Foundation with their Platinum Seal of Transparency.

Research

2021 was an excellent year for the RP Foundation’s research endeavors.  In February, the RP Foundation gave a charitable gift to the Penn RP Center.  The Penn RP Center is the only RP-focused research program in the nation, and works to engage clinicians and researchers from the University of Pennsylvania and the NIH’s Vasculitis Clinical Research Consortium (VCRC).  In late 2020, despite of obstacles posed by the COVID-19 pandemic, the Penn RP Center began evaluating and providing multi-disciplinary treatments to patients with RP.

In March, 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, the study was posted on Clinicaltrials.gov and as of October, 31 subjects have been enrolled.  Since then, the Penn RP Center has begun acquiring specimens for a RP-focused biospecimen and tissue repository.  As of November, 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.

Education

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 (Philadelphia, PA) 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 National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC).

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

These posters share insight into the patients’ experience of living with RP, offering providers the opportunity to facilitate pathways for more efficient patient care.

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. For more information about Race for RP, please visit the organization’s website.