ARPKD/CHF Alliance

Improving the lives of those affected

aka ARPKD/CHF Alliance   |   Kirkwood, PA   |  www.arpkdchf.org

Mission

Our mission is to educate, advocate, support, and advance research specifically for Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. Our purpose is to improve the lives of those affected. Guidestar DOES NOT link to IRS 990-N tax information, visit our website for this information. See "About Us," then "Financial and Organizational Information."

Ruling year info

2001

Principal Officer

Ms. C. Zak

Main address

PO Box 70

Kirkwood, PA 17536 USA

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EIN

23-3069557

NTEE code info

Alliance/Advocacy Organizations (P01)

Birth Defects, Genetic Diseases Research (H20)

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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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?

Patient Registry

The patient registry was created to collect comprehensive data on Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF). The goal is to improve disease understanding and care for patients, caregivers, medical professionals and researchers.

Population(s) Served
Families
Academics

To increase public awareness and education about this disease.

Population(s) Served
Caregivers
Families

Encourage participation in research that will benefit the patient population.

Population(s) Served
Families
Academics

Where we work

Financials

ARPKD/CHF Alliance

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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
  • 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.

ARPKD/CHF Alliance

Board of directors
as of 2/26/2021
SOURCE: Self-reported by organization
Board chair

Gloria Dengler

ARPKD/CHF Alliance Board

Rosie Bernado

Gloria Dengler

Dede Kelly

Michelle Lindemann

Colleen Zak

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