Relapsing Polychondritis Foundation
Relapsing Polychondritis Foundation
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About this organization
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.
About
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. GIVEN THE COLLABORATIVE EFFORTS AND OUR DIVERSE PARTNERSHIPS, THE RELAPSING POLYCHONDRITIS FOUNDATION EXPERIENCED CONTINUED GROWTH AND SUCCESS, AS EVIDENCED BY THE FOLLOWING: AWARENESS AND EDUCATIONAL EVENTS IN SEPTEMBER 2019, THE RP FOUNDATION AND 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 AUTOIMMUNITY INSTITUTE, AND THE AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION. IN SEPTEMBER 2019, THE RP FOUNDATION WAS THE EVENT SPONSOR OF THE FRIENDS OF PATIENTS AT THE NATIONAL INSTITUTES OF HEALTH (NIH) 2019 FRIENDS' NIGHT OUT, AN EVENING DEDICATED TO THE PARTNERSHIP OF PATIENTS, DOCTORS AND RESEARCHERS TO FIND LIFESAVING CURES. IN NOVEMBER 2019, THE RP FOUNDATION HOSTED AN INTERNATIONAL RELAPSING POLYCHONDRITIS RESEARCH NETWORK MEETING IN ATLANTA, GA TO (A) PROVIDE AN UPDATE ON THE RP CLASSIFICATION CRITERIA PROJECT, (B) INTRODUCE A NEW PROJECT TO MODIFY THE RP DISEASE ACTIVITY INDEX, AND (C) DISCUSS ONGOING AND RECENTLY COMPLETED RP-RELATED PROJECTS. IN MAY 2019, THE RP FOUNDATION ASSISTED THE NIH IN THE CREATION OF AN EASY-TO-UNDERSTAND, PEER-REVIEWED POSTER FOR MEDICAL PROFESSIONALS TO HAVE A RESOURCE TO HELP DETERMINE IF THEIR PATIENT MAY HAS RELAPSING POLYCHONDRITIS. IN MARCH AND APRIL 2020, THE RP FOUNDATION FACILITATED THE DISTRIBUTION OF THE NIH'S RELAPSING POLYCHONDRITIS PATIENT REPORTED SYMPTOMS SURVEY. PROGRAMS FUNDED IN FEBRUARY 2020, THE RP FOUNDATION PROVIDED A GIFT TO ESTABLISH THE PENN RELAPSING POLYCHONDRITIS FUND, WHICH SUPPORTS A UNIQUE PARTNERSHIP IN THE UNIVERSITY OF PENNSYLVANIA RP PROGRAM AND THE NIH SPONSORED VASCULITIS CLINICAL RESEARCH CONSORTIUM. IN SEPTEMBER 2019, THE RP FOUNDATION PROVIDED FUNDS TO FRIENDS OF PATIENTS AT THE NIH FOR A PATIENT-RELATED TRAVEL PROGRAM, WHICH FACILITATES RESEARCH AT NIH.
Interesting data from their 2020 990 filing
The purpose of the non-profit is stated in the filing as “The rp foundation's mission is to: (a) increase awareness about relapsing polychondritis; (b) provide support (primarily through the use of the internet, social media, and patient advocacy programs) for those who are affected by relapsing polychondritis, support research to advance a cure for relapsing polychondritis; (c) promote quality care for relapsing polychondritis patients; and (d) engage in such other activities in connection therewith that the board of directors may authorize, in all cases subject to the provision of section 501(c)(3) of the internal revenu code of 1986, as amended, or the corresponding provisions of any subsequent federal tax law (the "code").”.
Their activities were defined as: “The rp foundation's mission is to: (a) increase awareness about relapsing polychondritis; (b) provide support (primarily through the use of the internet, social media, and patient advocacy programs) for those who are affected by relapsing polychondritis, support research to advance a cure for relapsing polychondritis; (c) promote quality care for relapsing polychondritis patients; and (d) engage in such other activities in connection therewith that the board of directors may authorize, in all cases subject to the provision of section 501(c)(3) of the internal revenu code of 1986, as amended, or the corresponding provisions of any subsequent federal tax law (the "code").”.
- As per legal requirements, the non-profit's state of operation is reported as MN.
- The non-profit's address in 2020 as per the filing is 1202 LEXINGTON AVE STE 112, NEW YORK, NY, 10028.
- The form of the non-profit organization shows 0 employees as of 2020.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $100,000 and $250,000.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $99,352.
- The compensation policy for the CEO of the organization is established through an impartial evaluation and endorsement.
- The organization has 4 independent voting members.
- The organization was formed in 2014.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization's financial statements were compiled or reviewed by an accountant.
- The organization pays $25,000 in salary, compensation, and benefits to its employees.
- The organization pays $3,588 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
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