Pulmonary Fibrosis Foundation

Imagine a world without pulmonary fibrosis

Chicago, IL   |  www.pulmonaryfibrosis.org

Mission

The Pulmonary Fibrosis Foundation mobilizes people and resources
to provide access to high quality care and leads research for a cure so
people with pulmonary fibrosis will live longer, healthier lives.

Ruling year info

2000

President, Chief Executive Officer

Mr. William Schmidt

Main address

230 East Ohio Street Suite 500

Chicago, IL 60611 USA

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EIN

84-1558631

NTEE code info

Lung (H45)

Fund Raising and/or Fund Distribution (G12)

Human Service Organizations (P20)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Pulmonary fibrosis is a family of more than 200 different lung diseases. Doctors find it difficult to diagnose, and many times patients are misdiagnosed. Adding to this, there is limited awareness of the disease which not only affects the time to diagnose but also affects the amount of funding that is directed towards the disease. The Pulmonary Fibrosis Foundation aims to lead the charge in raising awareness, providing disease education and funding research so that patients that have the disease will live longer, healthier lives.

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?

PFF Summit

Features an innovative two-day continuing medical education (CME) program for physicians, researchers, registered nurses, and allied health professionals. Additionally, it includes a separate patient, family member, and caregiver program to address the growing educational needs of the pulmonary fibrosis community.

Population(s) Served
Caregivers
Families

A research-focused initiative consisting of de-identified patient information and biological samples, all of which will be used to facilitate the development of effective therapies and provide researchers with data in order to address specific research questions and facilitate recruitment for clinical trials.

Population(s) Served
Adults

The Educational Program provides patients, caregivers, family members, and medical providers access to materials covering a range of topics, including a Patient Information Guide, Disease Awareness Guide, Oxygen Guide, A Disease Webinar Series, and various other resources.

Population(s) Served
Adults

This program empowers patients, caregivers and health care professionals as spokespersons for the PF community on behalf of the PFF.

Population(s) Served
Adults

The CCN connects leading medical centers throughout the United States that have expertise in treating fibrotic lung diseases. These institutions are comprised of multi-disciplinary teams that deliver comprehensive patient care. The goal of the CCN program is to elevate the standard of care for patients living with pulmonary fibrosis.

Population(s) Served
Adults

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2014

Charity Navigator 2018

National Health Council 2018

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.

The Pulmonary Fibrosis Foundation is focused on our mission to act as the trusted resource for all who are affected by this disease. We aim to take an active role in bringing people, programs, and resources together to spread awareness and ultimately find a cure.

Our expert Medical Advisory Board and the biennial PFF Summit allow us to maintain an ongoing dialogue with physicians, researchers, industry representatives, and the patient community. This creates a collaborative environment that will help us achieve many of our goals.

Our peer-reviewed research program supports projects that improve the understanding of pulmonary fibrosis and will lead to successful therapies. We have developed significant relationships with industry partners and upheld our position as the honest broker to inform those affected by pulmonary fibrosis of important scientific breakthroughs.

The Pulmonary Fibrosis Foundation is focused on our mission to act as the trusted resource for all who are affected by this disease. Our community programs include:

PFF Care Center Network
PFF Patient Registry
PFF Patient Communication Center
PFF Ambassador Program
An international network of support groups
The PFF Summit
Comprehensive disease education materials

We hosted our 5th PFF Summit in 2019. Nearly 1,000 patients, caretakers, physicians, researchers, and industry partners gathered in San Antonio for our largest Summit to date.

Our Care Center Network has grown to 68 sites nationwide, and we will continue to expand.

Our Support Group Network now numbers over 150 across the globe and continues to grow.

The PFF Patient Registry was fully enrolled on-time and on-budget, and we plan to introduce the next phase of the Registry in 2020, the PFF Registry 2.0. Registry 2.0 will greatly increase the number of subjects in the study, will be more efficient in data collection, and will increase utilization from researchers. Registry 2.0 will be an unmatched resource for future research that will lead us down a path for a cure.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person),

  • 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 is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Pulmonary Fibrosis Foundation
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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.

Pulmonary Fibrosis Foundation

Board of directors
as of 3/11/2021
SOURCE: Self-reported by organization
Board chair

George Eliades

Jazz Pharmaceuticals

Michael Henderson

William Schmidt

Pulmonary Fibrosis Foundation

George Eliades

Martin Attwell

David McNinch

Laurie Chandler

Terence Hales

Jeff Harris

Julie Halston

Andrew Limper

Dana Ball

Barbara Murphy

Susan Jacobs

Pat Rosa

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

Organizational demographics

SOURCE: Self-reported; last updated 11/23/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data