PLATINUM2024

APFED

aka American Partnership For Eosinophilic Disorders   |   Atlanta, GA   |  www.apfed.org

Mission

Founded in 2001, the American Partnership For Eosinophilic Disorders (APFED) is a non-profit organization with a mission to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

Ruling year info

2002

President

Wendy Book

Vice-President

Elizabeth McCarty

Main address

PO Box 29545

Atlanta, GA 30359 USA

Show more contact info

EIN

76-0700153

NTEE code info

Alliance/Advocacy Organizations (G01)

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

APFED's hands-on approach is highly valued by those who seek information. Their prolific fundraising efforts have supported studies leading to development of novel therapeutics, methods to assess disease activity, and determinations of best standards of care. Their work supports young investigators in small studies and more senior investigators in multi-site consortium work. The latter types of studies will fill a critical knowledge gap, understanding what happens to patients over time and the best way to measure their disease activity. This information is vital to developing treatments. APFED led the charge in developing ICD codes for eosinophilic GI diseases. Without codes, the diseases do not “exist" to insurance companies and governmental agencies. Finally, their educational programs, website content, and innovative video platform provide cutting edge material. On every realm, APFED has blazed a trail for those affected by eosinophilic diseases.
Glenn T. Furuta, MD

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?

Education and Awareness

Annual patient education meeting held in the United States.

Development and maintenance of on-line and print educational materials.

Education of healthcare providers at national and international conferences

Participation on National committees

Awareness Events

National Eosinophil Awareness Week

Population(s) Served
Adults

APFED advocates in many ways. APFED proposed, wrote and advocated for successful passage of ICD-9-CM codes for subsets of eosinophilic diseases. APFED worked with the NIAID to develop a research agenda for eosinophil associated diseases and has advocated for increased federal funding for research. APFED also advocates for insurance coverage of medical foods such as elemental formula to treat eosinophilic conditions, and has supported a variety of legislative initiatives, including step therapy, ingredient labeling, and protections for rare disease patients. APFED educates the public and legislators about eosinophilic diseases, and offers online support. We also offer research grants through a competitive application process.

Population(s) Served
Adults
Children and youth

APFED offers research grant opportunities to established investigators. Proposals for research leading to advancement in the diagnosis, treatment and management of eosinophil associated diseases will be considered. One or more proposals are funded each year based on merit and funding.

Types of grants APFED has offered include HOPE Pilot grants, collaborative grants, consortium grants, bridge grants, and abstract awards

Population(s) Served
Unemployed people

Where we work

Awards

Abbey S. Meyers Award for Excellence in Leadership and Advocacy 2011

National Organization for Rare Disesases

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 research studies funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

HOPE Research Grants

Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

APFED's HOPE Grants are awarded to researchers with innovative ideas through a competitive peer-reviewed process. This metric shows the number of studies APFED funded in the years listed.

Total number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Education and Awareness

Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

Conferences and workgroups

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.

APFED aims to educate patients, providers, and the public; to support critical research initiatives; to advocate in a unified voice for the needs of the patients; and to provide support for patients coping with a diagnosis, no matter where in the journey they are. The goals of our organization, as outlined in our 10-year strategic plan, include:
• Become the global comprehensive advocacy organization for eosinophil-associated diseases

• Make accurate medical information available to the patient community and public based on the target audience age

• Advocate for membership to support medically necessary treatment payment

• Ensure that APFED is a sustainable, growing organization for thenext 20 years

• Make APFED a user-friendly patient support organization

• Provide an opportunity for patients/families to interact socially and obtain current information on the "state of the disease"

• Increase representation of rare eosinophil-associated diseases

• Increase collaboration with other organizations, medical societies, and federal agencies

• Provide current, accurate information to facilitate diagnosis andawareness

• Facilitate access to specialists with EAD experience

• Develop a research grant program for rare EADs

• Expand the scope and depth of research in eosinophil-associated diseases

• Ensure collaborative funding to support development of a cure

• Improve fundraising capacity of the organization

Forging new collaborative partnerships with stakeholder organizations and companies; structure and maintain focus groups to document patient needs and respond accordingly; identify and develop meaningful resources to the disease community; donor stewardship; and personalized fundraising support.

APFED has a robust and secure infrastructure, one full-time executive director and two part-time staff members, an engaged volunteer Board of Directors, and a team of volunteers. We organize and engage a variety of volunteer committees, including but not limited to a Business Advisory Council and patient focus groups. The organization has the resources and the technical and administrative skill to plan, secure funding, manage, and execute projects of benefit to our patient community.

Key achievements include the establishment of ICD-9-CM codes for eosinophilic gastrointestinal diseases (EGIDs), which are compatible with ICD-10; annual education conferences; a robust e-learning center for patients; the development of the HOPE Research Grant Program; establishment of National Eosinophil Awareness Week; and successful efforts to prompt and support the development of comprehensive guidelines for diagnosis and treatment of eosinophilic esophagitis, as well as increased federal funding for research.

Future goals include pursuit of new diagnostic codes for additional subsets of eosinophil-associated diseases (ICD-11), educational resources for rare subsets of eosinophil-associated diseases ; expanded video-based educational material; and advocacy to support expanded insurance coverage of prescribed medical foods to treat an eosinophil-associated disease.

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?

    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 understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

APFED
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Operations

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

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lock

Connect with nonprofit leaders

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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.

APFED

Board of directors
as of 06/25/2024
SOURCE: Self-reported by organization
Board chair

Pradyumna Tummala

Northside Hospital Cardiovascular Institute

Term: 2009 -

Wendy Book

Emory University

Tom Fanning

none

Elizabeth McCarty

CareSource

Pradyumna Tummala

Northside Hospital

Giles M Schanen

Michael Piansky

Wellstar Medical Group

Dawn McCoy

Juliet Ross

Gerald J. Gleich, MD

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 6/25/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 04/04/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.