Relapsing Polychondritis Foundation Inc.

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 RP 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

The RP Foundation facilitates awareness and education to improve the quality of life for patients with relapsing polychondritis (RP), a debilitating and sometimes fatal systemic inflammatory disease that is characterized by recurrent inflammation of cartilage and other tissues throughout the body. RP 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 this disease.

In June 2020, Nancy Linn, Chair of the RP Foundation, was featured on WQBQ Triangle Spotlight. The program was originally broadcast on radio and available worldwide on WQBQ’s website.

Beginning in May 2020, the RP Foundation collaborated with members of a United States based support group to manufacture and distribute cloth masks to protect the international RP community from COVID-19. The RP Foundation donated custom fabric with logos of RP organizations operating internationally. Over 300 one-of-a-kind masks were shipped throughout the United States, Canada, United Kingdom, France, Austria, Romania, Germany, Netherlands, Australia, and New Zealand.

In April 2020, the AHN Autoimmunity Institute featured the RP Foundation in its annual report.

In October 2019, the RP Foundation was the event sponsor of the Friends of Patients at the NIH 2019 Friends’ Night Out, an evening dedicated to the partnership of patients, doctors and researchers to find lifesaving cures. During the event, Francis Collins, MD, PhD, Head of the National Institutes of Health (NIH) said, "For rare diseases, I am glad that we’re talking about relapsing polychondritis. We have some really new insights that are happening. One of our members of the band, Peter Grayson, is part of that effort.” Nancy Linn, founder of Race for RP and Chair of the RP Foundation, delivered a compelling address to a room full of attendees during which she explained that she herself is an NIH research patient. And how the valuable research performed by the NIH had a profound impact on her life and inspired her to work to improve and transform the lives of other patients.

In September 2019, the RP Foundation and the Northern Michigan University's Doctor of Nursing Practice Program hosted a "Symposium Exploring Autoimmune Diseases" and facilitated participation and/or sponsorship by the Allegheny Health Network (AHN) Autoimmunity Institute, and the American Autoimmune Related Diseases Association (AARDA). The event was filled to capacity with upwards of 300 persons in attendance. The RP Foundation also arranged for TV6 and Fox UP to provide television coverage and co-sponsor the event. Kohr Motorsports graciously provided a branded race car supporting autoimmune disease awareness, a show-stopper which received a great deal of attention on the NMU campus and in the homecoming parade which followed. During the symposium attendees listened intently to keynote speakers and leading experts in the field, Dr. Joseph Ahearn followed by Dr. Susan Manzi, as they explained the causes and factors involved in triggering an overactive response of the immune system, current treatments available for autoimmune disorders, and the importance of offering interdisciplinary care for patients suffering from these chronic diseases. Dr. Emily Somers gave an incredibly detailed and thorough presentation on relapsing polychondritis (RP), exploring the pathophysiology of the immune system response in RP, the identification of etiologies, signs and symptoms of RP as well as a review of current and possible treatments of the disease.The final session of the symposium was a panel discussion with the keynote speakers as well as panel guest, Mike Duckwall, RN, FNP-BC. Addressing audience member submissions directly, the holistic question and answer session identified appropriate nursing and medical care for patients with immune disorders focusing on the concerns from patients, nurses and physicians in attendance on the realities of living with autoimmune disorders and the challenges they have faced in diagnosing, understanding and treating these diseases.

In May 2019, the RP Foundation, with outstanding assistance from Dr. Marcela Ferrada of the NIH, created an easy-to-understand, peer-reviewed poster for medical professionals to have a resource to know that her/his patient may have a rare autoimmune disease.

Population(s) Served
Adults

The RP Foundation facilitates research to improve the quality of life for patients with relapsing polychondritis (RP), a debilitating and sometimes fatal systemic inflammatory disease that is characterized by recurrent inflammation of cartilage and other tissues throughout the body. RP 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 this disease.

In February 2020, the RP Foundation provided a gift to establish the Penn Relapsing Polychondritis Fund, which supports a unique partnership between the University of Pennsylvania RP Program and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC).

In May 2020, the RP Foundation, the Vasculitis Foundation (VF), and the Vasculitis Patient Powered Research Network (VPPRN) have teamed up with partners in the Autoimmune Research Collaborative (ARC) to launch a new COVID-19 patient study.

In March and April 2020, the RP Foundation facilitated the distribution of the National Institute of Heath (NIH) Relapsing Polychondritis Patient Reported Symptoms Survey.

In November 2019, The RP Foundation hosted and International Relapsing Polychondritis Research Network (IRPRN) meeing in Atlanta, GA to (1) provide an update on the RP classification criteria project, (2) introduce a new project to modify the RP disease activity index, and (3) discuss ongoing and recently completed RP-related projects.

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 2020, the RP Foundation provided a gift to establish the Penn Relapsing Polychondritis Fund, which supports a unique partnership between the University of Pennsylvania RP Program and the National I

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.

In 2020, the RP Foundation provided a gift to establish the Penn Relapsing Polychondritis Fund, which supports a unique partnership between the University of Pennsylvania RP Program and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC). Additionally, the RP Foundation facilitated the National Institutes of Health (NIH) Patient Reported Symptoms Survey and the Vasculitis COVID-19 Patient Project.

In November 2019, the RP Foundation hosted members of the International Relapsing Polychondritis Research Network (IRPRN) at The American Hotel in Atlanta, GA to provide an update on the RP classification criteria project, introduce a new project to modify the RP disease activity index, and discuss ongoing and recently completed RP-related projects.

In October 2019, Race for RP in conjunction with the RP Foundation was the event sponsor of the Friends of Patients at the NIH 2019 Friends’ Night Out. It was an evening dedicated to the partnership of patients, doctors, and researchers to find lifesaving cures that benefit us all. Nancy Linn, founder of Race for RP and Chair of the RP Foundation, delivered a compelling address to a room full of attendees during which she explained that she herself is an NIH research patient.

In September 2019, the RP Foundation sponsored a Symposium Exploring Autoimmune Diseases which was presented by Northern Michigan University’s Doctor of Nursing Practice Program. The event was filled with upwards of 300 people in attendance. During the symposium attendees listened intently to keynote speakers and leading experts in the field, Dr. Joseph Ahearn followed by Dr. Susan Manzi, as they explained the causes and factors involved in triggering an overactive response of the immune system, current treatments available for autoimmune disorders, and the importance of offering interdisciplinary care for patients suffering from these chronic diseases. Dr. Emily Somers gave an incredibly detailed and thorough presentation on RP, exploring the pathophysiology of the immune system response in RP, the identification of etiologies, signs, and symptoms of RP as well as a review of current and possible treatments of the disease.

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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  • What challenges does the organization face when collecting feedback?

Financials

Relapsing Polychondritis Foundation Inc.
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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 Inc.

Board of directors
as of 12/2/2021
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.