APFED
Programs and results
What we aim to solve
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
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
Advocacy
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.
HOPE Research Grants
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
Where we work
Awards
Abbey S. Meyers Award for Excellence in Leadership and Advocacy 2011
National Organization for Rare Disesases
External reviews
Our results
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
Adults, Children and youth, 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, Age groups
Related Program
Education and Awareness
Type of Metric
Other - describing something else
Direction of Success
Holding steady
Context Notes
Conferences and workgroups
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 08/18/2022
Pradyumna Tummala
Northside Hospital Cardiovascular Institute
Term: 2009 -
Wendy Book
Emory University
Tom Fanning
none
Elizabeth McCarty
CareSource
Pradyumna Tummala
Northside Hospital
Gerald Gleich
University of Utah
Giles M Schanen
Michael Piansky
Wellstar Medical Group
Dawn McCoy
Juliet Ross
James DeLano
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
Equity strategies
Last updated: 04/04/2021GuideStar 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
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- 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.