Relapsing Polychondritis Foundation
The RP Foundation facilitates awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP) and advance a cure for this disease.
Programs and results
What we aim to solve
The RP Foundation facilitates awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP) and advance a cure for this disease.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Relapsing Polychondritis (RP) Awareness and Education
In 2021, the RP Foundation:
1. partnered with Race for RP and six internationally recognized motorsports teams. These teams and individual athletes used their significant platforms to increase awareness of this debilitating autoimmune disease;
2. collaborated with singer, songwriter, and producer, Denise Stefanie, who released a new single, “All In” to increase the public conversation around RP;
3. authored a poster about the founding and launch of the Penn RP Program that was accepted for presentation by the 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 Vasculitis Clinical Research Consortium (VCRC); and
4. sponsored two patient perspective posters that were accepted for presentation at the ACR Convergence.
Relapsing Polychondritis (RP) Research
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).
In March 2021, the VCRC Longitudinal Study was launched and enrolled its first patient. This research will help elucidate the underlying mechanisms of RP, with the potential to uncover biomarkers for the development of targeted RP therapies. 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, Dr. Shubhasree Banerjee presented on new development
Where we work
External reviews

Photos
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Our results
How does this organization measure their results? It's a hard question but an important one.
Number of research studies funded
This metric is no longer tracked.Totals By Year
Related Program
Relapsing Polychondritis (RP) Research
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
In 2021, the RP Foundation gave another gift to the Penn RP Center, which engages clinicians and researchers from the University of Pennsylvania and the NIH’s Vasculitis Clinical Research Consortium.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Relapsing Polychondritis Foundation
Board of directorsas of 01/06/2023
Nancy Linn
David D DeRosa
David M Bammert
Michael J Linn
Nancy A Linn
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
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Disability
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