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.

aka RP Foundation   |   New York, NY   |  www.polychondritis.org

Mission

The purpose of the Relapsing Polychondritis Foundation 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. RP is a debilitating and sometimes fatal systemic inflammatory disease that is characterized by recurrent inflammation of cartilage and other tissues throughout the body. This 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 currently is no cure for the disease.

Notes from the nonprofit

Please GIVE now at: https://give.polychondritis.org/give/242230/#!/donation/checkout

Ruling year info

2014

President

David Bammert

Main address

1202 Lexington Avenue, Box 112

New York, NY 10028 USA

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EIN

46-2458916

NTEE code info

Alliance/Advocacy Organizations (H01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Adults

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

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
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  • How is your organization using feedback from the people you serve?

  • With whom is the organization sharing feedback?

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

Financials

Relapsing Polychondritis Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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Relapsing Polychondritis Foundation

Board of directors
as of 1/2/2022
SOURCE: Self-reported by organization
Board chair

Nancy Linn

David DeRosa

David Bammert

Michael Linn

Nancy Linn

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 06/17/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.