Mission: TO PROVIDE EDUCATION AND SUPPORT TO PSC PATIENTS, FAMILIES AND CAREGIVERS AND TO RAISE FUNDS TO RESEARCH CAUSES, TREATMENTS AND POTENTIAL CURES FOR PRIMARY SCLEROSIN ... (More)

Psc Partners Seeking A Cure is a 501(c)(3) organization, with an IRS ruling year of 2005, and donations are tax-deductible.

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Contact Information

  www.pscpartners.org

 6900 E BELLEVIEW AVE STE 202
Greenwood Vlg CO 80111-1627



...  ...  ...  ...  

Encompass Rating System by Charity Navigator


Overall Score

100

out of 100

This charity's score is a passing score.
This overall score is calculated from multiple beacon scores: 90% Finance & Accountability and 10% Leadership & Adaptability


Learn about the Encompass Rating System: Overview | FAQ | Release Notes


This organization is potentially eligible for a Charity Navigator Star Rating. Vote Now to request to have our analyst team rate Psc Partners Seeking A Cure for a Star Rating. The organization currently has 2 votes.

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...   Finance & Accountability


This score provides an assessment of a nonprofit's financial health (stability, efficiency and sustainability) and its commitment to governance practices and policies.


Finance & Accountability Score

100

out of 100

The score earned by Psc Partners Seeking A Cure is a passing score

This V5 of the Finance & Accountability Score provides a baseline measure of an organization’s health including the indicators listed in the report below.

This score represents Form 990 data from 2019, the latest year published by the IRS.



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Finance & Accountability Report

100

of 100 points

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Program Expense

Program Expense Ratio

80.43%

Higher effect on score

More data  


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.


Program Expense Percentage

Amount of Credit Received

70% or higherFull Credit
60% - 69.9%Partial Credit
Below 50%Zero Points for Both Program Expense percentage AND Liabilities to Assets

Source: IRS Form 990

Board Composition

14/14 Independent

Higher effect on score


Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).


The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.


Source: IRS Form 990

Independent Audit or Financial Review

Has Audit/Review

Higher effect on score


An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:

Total Revenue Amount

Expectation to Receive Credit

$1 million or higherExpected to complete an audit
$500,000 - $1 millionExpected to complete an audit, review, or compilation
Less than $500,000No expectation (removed from scoring methodology)

Source: IRS Form 990

Liabilities to Assets Ratio

0.16%

Lower effect on score


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.

Liabilities to Assets Ratio

Amount of Credit Received

Less than 50%Full Credit
50% - 59.9%Partial Credit
60% or moreNo Credit

Source: IRS Form 990

Website

Listed

Lower effect on score


Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.


Nonprofits act in the public trust and reporting publicly on activities is an important component.


Source: IRS Form 990

Conflict of Interest Policy

Listed

Lower effect on score


Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.


This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.


Source: IRS Form 990

Board Meeting Minutes

Documented

Lower effect on score


Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.


An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.


Source: IRS Form 990

Document Retention and Destruction

Listed

Lower effect on score


Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.


This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.


Source: IRS Form 990

Whistleblower Policy

Listed

Lower effect on score


Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.


This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.


Source: IRS Form 990

Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting



MEEGAN CAREY, EXECUTIVE DIRECTOR

$110,728


RICKY SAFER, CEO

$0


FRED SABERNICK, CHAIR

$0


JOANNE HATCHETT, SECRETARY

$0


JENNIFER SIMS, TREASURER

$0


Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Activity data not reported from the IRS


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


Psc Partners Seeking A Cure reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Administrative Capacity


How COVID-19 impacted the organization's operations financially:

The pandemic has not had a significant impact upon our financial structure. Our donors, sponsors and grantors continue to support our mission.


How COVID-19 impacted the organization's delivery of programs:

For over 15 years, we had hosted in person conferences for rare disease patients and their caregivers. These events provide education about the disease and current research. In addition, we host support groups for the members of our rare disease community. In 2020, we had to cancel our in person conference. We pivoted to online educational sessions. In addition, we were able to provide zoom-room support sessions for patients and caregivers of all ages. Many of the medical meetings and conferences we attend in person each year were attended virtually. Due to the pandemic our rare disease community was not able to travel or attend in person meetings. We worked diligently to provide the our annual programs online. This increased our event attendance as many have not been able to attend due to illness or cannot afford to attend in person. We recorded most of these sessions and provide access on our website so they may be viewed at will.


How this organization adapted to changing conditions caused by COVID-19:

Our organization was well structured to utilize technology that allowed us to provide online programs and for our staff to work remotely. In addition, we had to cancel in person events but continued to provide webinars and virtual support group sessions instead. Many of our staff and volunteers work remotely on a regular basis. Therefore, we were able to quickly respond and react to the technical challenges that were required to continue our operations.


Innovations the organization intends to continue permanently after the pandemic:

PSC Partners will continue to provide online programming and support for our rare disease community. We will continue to search for better treatments and a cure for primary sclerosing cholangitis by remaining flexible and embracing challenges. COVID has taught us many valuable lessons about the importance of not being afraid to embrace change and by remaining flexible.


...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Psc Partners Seeking A Cure cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Psc Partners Seeking A Cure? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Largest Programs

Largest Programs



Psc Partners Seeking A Cure reported its largest program on its FY 2019 Form 990 as:


$708,511

Spent in most recent FY

100%

Percent of program expenses


PROVIDE ONLINE EDUCATION AND SUPPORT TO PRIMARY SCLEROSING CHOLANGITIS (PSC) PATIENTS AND THEIR FAMILIES AND AN ANNUAL CONFERENCE FOR PATIENTS AND CAREGIVERS. TO RAISE FUNDS AND SUPPORT RESEARCH TO FI ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Psc Partners Seeking A Cure is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


A world with no primary sclerosing cholangitis.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: Primary sclerosing cholangitis (PSC) is a rare and idiopathic chronic liver disease. No FDA approved treatment exists for PSC. We are driving research to identify treatments and a cure for PSC.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Two: To provide education and support to patients, caregivers, families and those impacted by this rare disease. Virtual and online sessions to present the latest information about research and PSC.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Four major areas we pursue are: patient-centered research, development of a Patient Reported Outcome Measure, improved understanding of the natural history of PSC, patient-focused drug development.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

With the completion of the Patient Focused Drug Development (PFDD) Forum in 2020, hiring of the Director of Research Strategy, and planned expansion of the Registry to support natural history studies, PSC Partners is prepared to expand programs and strategic initiatives over the next year. PSC Partners will develop a collaborative research network, actively engaging with all stakeholders to push forward an international research agenda and breaking down barriers and silos. As the uniting force, PSC Partners will continue to educate and support PSC patients and their caregivers, promote and facilitate PSC research, identify and inspire research teams, and bring awareness to the serious unmet needs faced by PSC patients at every step in research and drug development. Altogether, we will identify the largest gaps in understanding PSC and prioritize the most high impact research questions and therapeutic developments.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Community Building

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

Our annual conferences are a source of empowerment to PSC patients and their caregivers on two levels. First and foremost, our conferences provide crucial information about PSC that enables patients to be knowledgeable about their disease so that they can effectively advocate for themselves. Because PSC is so rare, physicians are frequently inexperienced with treating PSC; oftentimes our community members find that they are the only PSC patient their physician has ever seen. Second, listening to PSC specialists who have had concrete experience in treating PSC patients takes away the sense of isolation and despair felt by many PSC patients. Very importantly, for physicians, our conferences present the opportunity to exchange ideas, to advocate for patients, and to understand the issues facing PSC patients. These conferences help to widen our network of medical professionals and hepatologists who turn into fervent advocates and committed advisors to our organization.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


As part of its core mission, PSC Partners Seeking a Cure organizes annual conferences to educate and support PSC patients and their caregivers, to promote and facilitate PSC research, to inspire research teams in medical centers to commit to PSC research, and to bring awareness to the serious unmet needs faced by PSC patients. For sixteen years, PSC Partners has chosen its in-person conference sites carefully, and has worked closely with gastroenterology and hepatology departments in centers that are highly experienced in PSC care and research (Baylor in Dallas, Cleveland Clinic, Mayo Clinic Jacksonville, Mayo Clinic Rochester, Northwestern Hospital in Chicago, University of California Davis, University of Colorado Health, University of Pittsburgh Medical Center, and Yale University Medical Center). Through the years, we have consequently collaborated with many of the leading PSC research and treatment experts. Since the advent of COVID, our in-person events have been cancelled and pivoted to include virtual presentations, recordings and "zoom-rooms." Through virtual events and recordings, available on our website, we have been able to continue to provide information and support. Topics were expanded to include updates about the impact of COVID upon our rare disease community. We also organized the ROADMAP Initiative (Research Opportunities And Development - Meetings to Accelerate Progress) as a means to virtually educate our patient community and bring together patients, caregivers, researchers, clinicians, and industry members to define key unmet needs and brainstorm viable solutions for PSC. A primary objective of the ROADMAP Initiative was to strengthen lines of communication across stakeholders in our community and provide opportunities for patients to share their experiences and identify areas of unmet need. At the start of each meeting, PSC Partners aimed to center and align all stakeholders on the importance of patient voice and patient-driven research.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

Not Currently Scored

Psc Partners Seeking A Cure is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.


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Culture & Community Report

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Constituent Feedback

Constituent Feedback

Not Scored


This organization reported that it is collecting feedback.


Here's how this organization is listening and learning from the people they serve:


How is your organization collecting feedback from the people you serve?

Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Paper surveys, Community meetings or town halls, Suggestion box/email


How is your organization using feedback from the people you serve?

To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve


With whom does your organization share the feedback you got from the people you serve?

The people we serve, Our staff, Our board


What challenges does your organization face in collecting feedback from the people you serve?

We don't have any major challenges to collecting feedback


Briefly describe a recent change that your organization made in response to feedback from the people you serve.

Note: The organization did not respond to this question.



Methodology


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.


Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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