Disease, Disorders, Medical Disciplines

PSC Partners Seeking a Cure

aka Liver and Bile Duct Disease Research and Education Foundation

Greenwood Village, CO

Mission

PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The mission of PSC Partners Seeking a Cure is to provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and potential cures for primary sclerosing cholangitis.

Ruling Year

2005

CEO

Ms. Ricky Safer

Executive Director

Ms. Meegan Carey

Main Address

6900 E. Belleview Ave. Suite 202

Greenwood Village, CO 80111 USA

Keywords

PSC, Primary Sclerosing Cholangitis, cholestatic liver disease, bile duct disease, medical research, PSC patient registry

EIN

20-2112635

 Number

2217970293

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (G12)

IRS Filing Requirement

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

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Social Media

Blog

Programs + Results

What we aim to solve

Primary sclerosing cholangitis (PSC) is a rare, chronic and progressive bile duct disease that damages the bile ducts inside and outside the liver. With PSC, bile ducts are inflamed, and the inflammation leads to scarring and narrowing (sclerosing) of the affected ducts. Eventually, blockages may occur. As the scarring blocks more and more ducts, bile becomes trapped in the liver. This damages the liver and can result in fibrosis and cirrhosis of the liver and liver failure. There are no treatments to slow down disease progression and no cure for PSC other than liver transplantation. PSC is a rare disease that predominantly affects 30 to 40-year-old men. However, PSC also occurs in children of any age, women, and the elderly. About 43 percent do not have any symptoms when diagnosed, and diagnosis is made through a combination of blood tests and imaging. Over 75 percent of PSC patients have inflammatory bowel disease (IBD). PSC is also associated with other autoimmune diseases.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Raise Funds for PSC Research

Patient Conferences

PSC Partners Patient Registry

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of conference attendees

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Patient Conferences

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context notes

Annual conference attendees

Number of PSC Partners registry participants per year

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

PSC Partners Patient Registry

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

The PSC Partners Patient Registry is a place to store information about those affected by PSC. The data collected includes information on diagnosis, family history, quality of life, medications, surge

Number of research studies conducted

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Raise Funds for PSC Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context notes

For more information, please visit http://pscpartners.org/research-grants/#Awarded_2019

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

The goal of PSC Partners Seeking a Cure is to provide education and support to PSC patients and their caregivers, and to fund research into better treatments and a cure for the disease. Our dedication to this mission will continue until we have a world without PSC.

PSC Partners Seeking a Cure understands that patients are more than their disease. We recognize the critical importance of funding the very best in Primary Sclerosing Cholangitis (PSC) research, as well as providing support and resources for PSC patients and their caregivers until there is a cure. PSC Partners Seeking a Cure plans to meet these goals by holding annual conferences in conjunction with leading medical institutions, hosting a PSC Patient Registry, and facilitating promising PSC research.

The greatest strength of PSC Partners Seeking a Cure is its community of dedicated patients and caregivers, who are passionate about finding better treatments and a cure for PSC. Our annual conferences provide an avenue for PSC patients and caregivers to connect and support each other, and to learn of cutting-edge PSC research developments. The leadership of our organization thoroughly assesses and budgets for all of our programs on an ongoing basis. Our Scientific/Medical Advisory Committee consists of leading PSC medical experts who carefully evaluate and select the research that we fund annually. Our Patient Registry was created in collaboration with the NIH Office of Rare Diseases Research (ORDR), and all data is owned by PSC Partners Seeking a Cure. Patient privacy and site security are very important to PSC Partners. The Registry is monitored by an Institutional Review Board and is HIPAA and FISMA compliant.

At PSC Partners Seeking a Cure, we carefully evaluate our programs and frequently request feedback from our community to assess how effectively we meet their needs. We work to expand and enrich our involvement in the medical field to better advocate on behalf of PSC patients and their caregivers, so that we can find better treatments and a cure for Primary Sclerosing Cholangitis.

To date, PSC Partners Seeking a Cure has awarded $4.3 million to research into better treatments and a cure for primary sclerosing cholangitis. Our Patient Registry provides a wealth of de-identified, disease-specific patient information for PSC researchers who would otherwise not have access to this information in one source. Over fourteen hundred and fifty PSC patients have chosen to participate in our Patient Registry, and more join every day. We also provide support to a thriving community of PSC patients and caregivers who share the common experience of coping with this rare disease. We have hosted 15 conferences, for PSC patients and caregivers, in conjunction major medical centers throughout the country. We have not yet found a cure, but we will work tirelessly until we do.

How We Listen

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

Source: Self-reported by organization

the feedback loop
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: electronic surveys (by email, tablet, etc.), paper surveys, focus groups or interviews (by phone or in person), community meetings/town halls, suggestion box/email.
How is the organization using feedback?
We use feedback to: 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 is the organization sharing feedback?
We share feedback with: the people we serve, our staff, our board.

External Reviews

Affiliations & Memberships

PSC Partners Seeking a Cure Canada 2020

Photos

Financials

PSC Partners Seeking a Cure

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  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

ETHICS & 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? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

SOURCE: Self-reported; last updated 04/22/2020

Leadership

No data

The organization's co-leader identifies as:

Gender Identity
Female

Race & Ethnicity

No data

Gender Identity

No data

Sexual Orientation

No data

Disability

No data