Amerian Porphyria Foundation

What Amerian Porphyria Foundation does

The American Porphyria Foundation (APF) is a 501(c)(3) non-profit patient advocacy organization dedicated to improving the health and well-being of individuals and families impacted by Porphyria. Founded in 2010 and headquartered in Sarasota, FL, the APF serves as the leading U.S. advocacy organization for all eight inherited types of porphyria, addressing diagnostic delays, limited treatment access, and provider education gaps. Its beneficiary base includes patients, families, caregivers, and healthcare professionals across dermatology, hepatology, hematology, and emergency medicine.

The foundation delivers its mission through a portfolio of curated educational resources, support services, and advocacy tools. Core offerings include the Safe/Unsafe Drug Database for acute porphyrias, Emergency Room Guidelines for acute attacks, the AHP Drug Safety Database, and an Access to Care Toolkit for securing Panhematin treatment. These are complemented by Patient and Healthcare Professional portals, physician directories, CME resources, and two flagship programs — Shadow Jumpers for children with Erythropoietic Protoporphyria (EPP) and the Global Porphyria Alliance for international patient connections. Distribution spans a website portal, podcast, social media, email newsletter, in-person patient education meetings across multiple U.S. cities, medical conference exhibits at AASLD and ASH, and clinical trial recruitment.

The APF's business model is donation-driven, with no fees charged for core services. Revenue derives from individual charitable contributions, grassroots fundraising, and corporate sponsorships from pharmaceutical partners including Recordati Rare Diseases (click-campaign donations during Porphyria Awareness Week), Alnylam Pharmaceuticals (educational event sponsorship), DISC Medicine (regulatory advocacy), and Clinuvel Pharmaceuticals (FDA advocacy, including the 2019 Scenesse Priority Review). The foundation supplements fundraising through an online merchandise store, volunteer networks, and a Board of Trustees governance structure, operating with 1-10 employees.

Name

Amerian Porphyria Foundation

Legal name

American Porphyria Foundation

Website

https://porphyriafoundation.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

The American Porphyria Foundation is a 501(c)(3) patient advocacy organization serving individuals and families affected by Porphyria across all eight disease types through education resources, drug safety databases, support programs, and FDA regulatory advocacy.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Patient support services
• Porphyria education
• Nonprofit healthcare foundation
• Medical education resources

Headquarters

HQ city

Houston

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: As a 501(c)(3) non-profit foundation, the APF relies primarily on charitable donations from individuals, families, and supporters impacted by porphyria. They conduct fundraising campaigns including the annual Porphyria Awareness Week click campaigns.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels9 records

Core offering

The American Porphyria Foundation is a 501(c)(3) non-profit patient advocacy organization that provides education, support services, and advocacy for individuals and families affected by the eight types of Porphyria. Its offerings include drug safety databases, emergency room guidelines, patient and healthcare professional portals, access-to-care toolkits, support programs (Shadow Jumpers for children with EPP, Global Porphyria Alliance), and clinical trial recruitment. Services are provided free of charge and funded through donations, grants, and pharmaceutical sponsorships.

Product overview

The American Porphyria Foundation (APF) is a 501(c)(3) non-profit patient advocacy organization dedicated to improving the health and well-being of individuals and families impacted by Porphyria. Rather than a technology platform, APF provides a suite of educational resources, support services, and advocacy tools. The core offerings include the Safe/Unsafe Drug Database for identifying safe medications, Emergency Room Guidelines for acute porphyria attacks, the AHP Drug Safety Database, and an Access to Care Toolkit for securing treatment access. APF operates patient and healthcare professional portals providing educational materials, physician directories, CME resources, and support programs including Shadow Jumpers for children with EPP and the Global Porphyria Alliance for international patient connections.

Differentiator

Problem solved

Functional benefit

Brands

• Shadow Jumpers: Program dedicated to supporting children living with photosensitive porphyria conditions, helping them navigate daily life with light sensitivity.
• Global Porphyria Alliance

Products and services

• Safe / Unsafe Drug Database

Quantifiable outcome

• The APF has facilitated FDA engagement on Bitopertin for EPP/XLP treatment, resulting in favorable FDA interactions and expanded access suggestions.

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Six partnerships are on record, tiered core and minor.

• Recordati Rare DiseasescoreGTM or Marketing Partner · 1 January 2026Recordati Rare Diseases partners with the APF during Porphyria Awareness Week through a click campaign donation program. For each click/engagement during the awareness week campaign, Recordati Rare Diseases makes a $5 donation to the APF. This partnership supports the APF's awareness and fundraising efforts.
• Alnylam PharmaceuticalscoreGTM or Marketing Partner · 1 January 2026Alnylam sponsors educational events for the porphyria community, including virtual educational events and in-person meetings such as events in Rochester, MI. These events provide education about porphyria treatments and management.
• DISC MedicinecoreStrategic or Co-development Partner · 1 January 2026The APF collaborated with DISC Medicine following the FDA's denial of Bitopertin approval for EPP/XLP treatment. The organizations worked together to engage FDA rare disease representatives and develop a strategy for expanded access programs, with news from DISC Medicine and APF impact appearing soon according to the APF's statement.
• Clinuvel PharmaceuticalscoreStrategic or Co-development Partner · 1 January 2019The APF played a crucial role in advocating for FDA Priority Review of Scenesse (afamelanotide) for Erythropoietic Protoporphyria (EPP). The patient community, coordinated by APF, wrote letters, made calls, signed petitions, sent photographs, and attended meetings to support this treatment approval effort.
• AASLD (American Association for the Study of Liver Diseases)minorGTM or Marketing Partner · 1 January 2018The APF exhibited at the AASLD convention in San Francisco, CA to raise awareness about porphyria among hepatology and liver disease specialists. Time slots were available for volunteers to staff the APF booth.
• ASH (American Society of Hematology)minorGTM or Marketing Partner · 1 January 2018The APF exhibited at the ASH convention in San Diego, CA to increase porphyria awareness among hematology professionals. This supports the APF's goal of connecting patients with knowledgeable healthcare providers.

Recent moves6 records

Expansion highlights6 records

Direct peers

• Global Genes: Global rare disease patient advocacy organization providing education, resources, and connections across hundreds of rare conditions. Comparable as a peer rare disease advocacy nonprofit with overlapping patient education and global community building objectives.
• Platelet Disorder Support Association: Patient advocacy organization focused on immune thrombocytopenia (ITP), offering drug safety information, patient education, and clinical trial recruitment. Closely comparable in mission, scale, and operations to APF as a single-disease hematology-focused nonprofit.
• American Liver Foundation: Disease-specific health nonprofit focused on liver conditions, including Acute Hepatic Porphyria and other hepatic porphyrias. Operates with the same patient education, advocacy, and resource distribution model as APF and shares hepatology specialist engagement channels (e.g., AASLD).
• Hemophilia Federation of America: Patient advocacy nonprofit serving individuals with hemophilia and other bleeding disorders, with similar drug safety database resources, healthcare professional education programs, and pharma sponsorship dependencies. Comparable in mission structure and target stakeholder mix.
• Iron Disorders Institute: Small disease-specific patient advocacy nonprofit focused on iron overload and related hematologic disorders, with a similar headcount scale and patient education mission. Comparable in operating model and scale as a small 501(c)(3) health advocacy foundation.

Broad incumbents

• Muscular Dystrophy Association (MDA): Large disease-specific nonprofit focused on neuromuscular diseases, with pharma partnerships, clinical care centers, and federal advocacy programs. Comparable in advocacy and resource distribution model though operating at significantly larger scale than APF.
• American Cancer Society: Large US disease-specific health nonprofit delivering patient education, support services, research funding, and policy advocacy. Shares the same 501(c)(3) health advocacy operating model as APF, though at vastly larger scale and broader disease scope.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit focused on accelerating biotech innovation for rare disease treatments through federal legislative advocacy. Comparable as a fellow rare disease advocacy organization with strong FDA engagement focus overlapping APF's regulatory work.
• National Organization for Rare Disorders (NORD): NORD is the largest umbrella rare disease advocacy organization in the US, operating as a 501(c)(3) providing patient education, research funding, and policy advocacy across hundreds of rare conditions including Porphyria. Directly comparable as a fellow rare disease patient advocacy nonprofit serving overlapping patient and policy constituencies.

Others

• AAPMR (American Academy of Physical Medicine and Rehabilitation): Medical professional society offering physician education and clinical guidelines similar to APF's healthcare professional portal. Comparable as a healthcare professional-facing education and resource organization rather than a patient advocacy peer.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/americanporphyriafoundation
• Xx.com/porphyria_help
• LinkedInlinkedin.com/company/american-porphyria-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Subsidiaries2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Amerian Porphyria Foundation