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NephCure

For rare kidney disease.

King of Prussia, PA   |  nephcure.org

Mission

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. NephCure is a U.S. tax exempt 501(c)(3) public charity established in 2000.

Ruling year info

2001

Chief Executive Officer

JOSHUA TARNOFF

Main address

150 S Warner Road Suite 402

King of Prussia, PA 19406 USA

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Formerly known as

NephCure Foundation

EIN

38-3569922

NTEE code info

Kidney (H44)

Kidney (G44)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2021, 2020 and 2019.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Working with all stakeholders to bring treatments for Nephrotic Syndrome and FSGS to the market.

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?

Research Acceleration

NephCure is working to identify all patients and educate them on clinical trials.

Population(s) Served
Adults
Children and youth

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2018

Videos

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 patients positively affected by educating clinicians

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These numbers are estimated by how many clinicians attended our educational offerings and their responses to our surveys.

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.

NephCure aims to accelerate research into treatments for FSGS and Nephrotic Syndrome.

NephCure is working to identify all NS/FSGS patients and educate them about clinical trials.

NephCure is the only patient advocacy group serving this population. We know the doctors who treat these patients and many of the patients already.

We have partnered with multiple (upwards of 20) pharmaceutical and biotech companies to help recruit for upcoming trials.

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.

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

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

  • What challenges does the organization face when collecting feedback?

Financials

NephCure
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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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  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

NephCure

Board of directors
as of 03/31/2023
SOURCE: Self-reported by organization
Board chair

Michael Levine

Irving Smokler, Ph.D.

Ron Cohen

Michael Levine

Andrew Silverman

Carol Smokler, Ph.D.

Elaine Kamil, M.D.

William Smoyer, M.D.

David Kershaw, M.D., FAAP

Jim Duquette

Scott Goldstein

Sarretta McDonough, Esq.

John Roy

Jennifer Geisser

Manu Varma, D.O.

Chris Whitney

Mark Winward

Stephen Hollomon

Kirk Campbell, M.D.

Laurel Damashek

Charles Davis III

Kevin Mott

Rebecca Oag

Joshua Roy, Esq.

Christopher J. Windisch

Martin Zimmerman

Troy Jones

Daniel Simon

Tyler Wellman, M.D.

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No