American Partnership for Eosinophilic Disorders

What American Partnership for Eosinophilic Disorders does

The American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) patient advocacy nonprofit founded in December 2001 by Beth Allen and headquartered in Atlanta, Georgia. The organization educates, supports, and funds research for patients and families affected by eosinophil-associated diseases, including eosinophilic esophagitis (EoE), other EGIDs, eosinophilic asthma, hypereosinophilic syndromes, and related rare conditions. It serves four primary stakeholder groups: patients (adults, children, and teens), caregivers and family members, healthcare providers and researchers, and payers/policymakers, with additional secondary support to managed-care professionals.

APFED delivers its mission through a portfolio of interconnected programs rather than a unified software platform. Core assets include the Specialist Finder database of self-identified providers, the Patient Registry powered by PatientCrossroads (since June 2020), the Eos Connections online support community hosted on Inspire, the HOPE on the Horizon Research Program (pilot grants and jointly funded awards with AAAAI and CEGIR), the EOS Support Webinar Series, the "Real Talk: Eosinophilic Diseases" podcast, the EOS Connection Annual Conference, and newer resources such as Navigate Eos Care and BiologicMeds.org. The technology layer is composed of third-party platforms (PatientCrossroads, Inspire, EveryAction for email, Bonfire for merchandise) rather than proprietary infrastructure.

APFED's revenue model is that of a typical rare-disease patient advocacy nonprofit: individual donations, corporate matching gifts, pharmaceutical company sponsorships (Abbott, Sanofi Regeneron, Knopp Biosciences), and modest merchandise sales through its own e-commerce store and Bonfire storefront. Merchandise is priced in the $2–$20 range (wristbands and pins at $2; t-shirts at $15–$16; elimination diet cookbook at $20; patient education packs at $1 per 25-pack). Core services are free to patients and families, and the organization reports financials through GuideStar at the Platinum transparency level.

Name

American Partnership for Eosinophilic Disorders

Legal name

American Partnership for Eosinophilic Disorders

Website

https://apfed.org

Company type

Private

Founded year

2001

Operating status

Operating

Headcount range

1–10 employees

Short description

The American Partnership for Eosinophilic Disorders is a 501(c)(3) patient advocacy nonprofit founded in 2001 that educates, supports, and funds research for patients with eosinophil-associated diseases, operating a specialist finder, patient registry, online community, and research grant program.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Social Advocacy Organizations (8133)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Patient Advocacy, Navigation & Access to Care (BPAGACAH), Health & Medical Research Grantmaking Foundations (BPAGAKAL), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Patient advocacy services
• Rare disease education
• Eosinophilic disease research
• Nonprofit health support
• Patient registry services

Headquarters

HQ city

Atlanta

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: Individual donations, corporate donations, and matching funds from supporters
2. E-commerce Store: Sale of awareness merchandise including apparel, wristbands, pins, cookbooks, and patient education materials
3. Corporate Partnerships: Corporate sponsorships and pharmaceutical company partnerships for education and awareness initiatives

Pricing tiers

Distribution channels4 records

Marketing channels9 records

Core offering

APFED is a 501(c)(3) nonprofit patient advocacy organization that educates and supports patients and families affected by eosinophil-associated diseases, funds independent research through the HOPE on the Horizon Research Program, and advocates for policy changes affecting the community. It operates the Specialist Finder database, the PatientCrossroads-based Patient Registry, and the Inspire-hosted Eos Connection online support community, and runs free educational programs including an annual conference, webinars, and a podcast.

Product overview

APFED is a patient advocacy nonprofit organization (501c3) that provides education, research funding, advocacy, and support services for patients and families affected by eosinophil-associated diseases. Rather than a unified software platform, APFED offers a portfolio of interconnected services including: educational resources (webinars, podcasts, conferences, patient materials), a Specialist Finder database to locate medical professionals, a Patient Registry for research participation, the HOPE on the Horizon Research Program for grant funding, an online support community, advocacy tools, and a merchandise store. These services work together to support patients throughout their care journey from diagnosis through ongoing management.

Differentiator

Problem solved

Functional benefit

Brands

• EOS Connection: Annual patient education conference on eosinophil-associated diseases
• HOPE on the Horizon Research Program
• EOS Support Webinar Series
• Real Talk: Eosinophilic Diseases
• National Eosinophil Awareness Week

Quantifiable outcome

• Established ICD-10-CM codes for eosinophil diseases
• +1 more outcomes

Segments4 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eleven partnerships are on record, tiered core and minor.

• International Eosinophil Society (IES)coreStrategic or Co-development Partner · 24 May 2018Partnership to propose and establish new ICD-10-CM codes for subsets of eosinophilic diseases. APFED and IES collaborated to advocate for medical coding updates to improve diagnosis and tracking of eosinophil-associated diseases.
• Knopp BiosciencescoreStrategic or Co-development Partner · 6 September 2017Partnership to advance awareness of hypereosinophilic syndromes. Knopp Biosciences and APFED announced collaboration in September 2017 to raise awareness and support for patients with hypereosinophilic syndromes.
• Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)coreStrategic or Co-development PartnerAPFED co-funds research and collaborates with CEGIR, a network of researchers studying EGIDs. The organization has provided pilot grants jointly with CEGIR and participates in research initiatives.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerAPFED is a member of NORD, gaining access to advocacy resources, annual summit, and visibility within the rare disease community.
• AbbottminorGTM or Marketing PartnerPharmaceutical company providing translation sponsorship for Spanish-language patient education materials on eosinophilic diseases.
• Sanofi RegeneronminorGTM or Marketing PartnerPharmaceutical company providing translation sponsorship for Spanish-language patient education materials. Also featured on Sanofi Patient Advocacy Voices podcast.
• Global Allergy & Airways Patient PlatformminorGTM or Marketing PartnerInternational patient platform providing translation sponsorship for Spanish-language patient education materials.
• Children's Medical Nutrition AllianceminorStrategic or Co-development PartnerCollaboration to provide nutritional support for families impacted by eosinophil-associated diseases, particularly during formula shortages.
• American Academy of Allergy, Asthma & Immunology (AAAAI)coreStrategic or Co-development PartnerAPFED partners with AAAAI for research abstract awards, HOPE pilot grants, and attending annual meetings to share patient perspective.
• American College of Gastroenterology (ACG)coreStrategic or Co-development PartnerAPFED attends ACG Annual Scientific Meeting to share patient perspective and strengthen collaborations with gastroenterology professionals.
• NASPGHAN (North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition)coreStrategic or Co-development PartnerPartnership for Outstanding EGID Abstract Awards and collaboration on pediatric eosinophilic gastrointestinal disease guidelines.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Campaign Urging Research for Eosinophilic Diseases (CURED): A patient advocacy nonprofit dedicated to funding research and raising awareness for eosinophilic gastrointestinal diseases. Directly comparable as a sibling rare-disease patient advocacy organization with overlapping mission, fundraising model, and research-grant programs.
• Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR): An NIH-funded multi-center research consortium focused on EGIDs. Directly comparable because APFED co-funds research and collaborates with CEGIR on pilot grants and registry initiatives, operating in the same disease space.
• International Eosinophil Society (IES): International scientific society for eosinophil research that partnered with APFED on ICD-10-CM code advocacy. Comparable as a peer organization advancing the same disease area through research and policy collaboration.
• American Partnership for Eosinophilic Disorders (CES) — Children's Eosinophilic Support Group: Note: included as a placeholder for additional eosinophilic-disease-specific peer advocacy groups operating in the same niche (e.g., Eosinophilic Esophagitis-focused organizations). These organizations compete for the same donor dollars and patient engagement in this rare-disease space.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing the broader rare-disease community of which APFED is a member. Comparable as a larger, established patient-advocacy umbrella providing shared resources, policy influence, and visibility APFED leverages.
• Global Genes: A large rare-disease advocacy nonprofit offering toolkits, events, and coalition programs to disease-specific organizations. Comparable as an enabling incumbent that competes for the same donor dollars and offers overlapping patient-advocacy services.
• EveryLife Foundation for Rare Diseases: Rare-disease policy advocacy nonprofit focused on accelerating biotech innovation and access. Comparable because it pursues the same legislative and policy agenda (NIH funding, newborn screening, access to therapies) that APFED engages in.
• Allergy & Asthma Network: Patient advocacy nonprofit serving people with allergies, asthma, and related conditions. Comparable as an adjacent incumbent addressing eosinophilic asthma and overlapping allergy patient populations with similar education and advocacy programs.
• Asthma and Allergy Foundation of America (AAFA): Large patient advocacy nonprofit for asthma and allergies. Comparable as an adjacent incumbent whose patient base overlaps with APFED's eosinophilic asthma population and which pursues similar awareness and policy initiatives.

Others

• Inspire: Platform provider that hosts APFED's Eos Connection online support community. Comparable as an infrastructure/ecosystem partner enabling APFED's community engagement, and as a thematic peer in the patient-community platform category.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/APFEDorg
• YouTubeyoutube.com/APFED
• Facebookfacebook.com/APFED
• Instagraminstagram.com/apfedorg
• Pinterestpinterest.com/apfed
• LinkedInlinkedin.com/company/american-partnership-for-eosinophilic-disorders

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about American Partnership for Eosinophilic Disorders