United Porphyrias Association

What United Porphyrias Association does

United Porphyrias Association (UPA) is a 501(c)(3) nonprofit patient advocacy organization headquartered in Bethesda, Maryland, dedicated to improving the quality of life for people affected by porphyria, a group of rare genetic disorders of heme synthesis encompassing acute hepatic subtypes (AIP, HCP, VP, ADP) and cutaneous subtypes (CEP, EPP, XLP, PCT, HEP). UPA addresses a core market failure in rare-disease care: patients reportedly wait an average of 15 years for diagnosis and struggle to find qualified specialists. The organization delivers a portfolio of free programs including ConnectUP virtual peer-support meetings, UPA One to One ambassador matching, the Porphyria Navigator service (staffed by an RN), an AHP Drug Safety Database (available in English and Spanish), expert-reviewed Summing UP research summaries, the Spotlight Porphyria blog, and the annual Porphyria Palooza patient conference (next: Kansas City, October 2026). It also maintains a Scientific Advisory Board drawn from Mount Sinai, UCSF, UT Southwestern, Massachusetts General Hospital, and Mayo Clinic.

Underlying delivery is a Squarespace-hosted web platform (porphyria.org, with a parallel Spanish site at porfiria.lat) layered with standard community channels — a Porphyria Together Facebook group, Instagram, a monthly Porphyria eNews newsletter, and Facebook Live Q&A sessions. UPA does not sell products or services; its revenue model is donations and grants from individuals, foundations, and corporate partners, with a notable non-dilutive award being the Chan Zuckerberg Initiative's Rare As One grant received in October 2024. The organization is supported by a small staff of 1-10, led by President Kristen Wheeden and including a COO, directors of Communications and Community Engagement, a Legislative Advocacy Manager, a Patient Navigator (RN), and a UPA Latin America Director.

Strategically, UPA functions as the connective tissue between porphyria patients, academic experts (via the NIH Porphyrias Consortium and the International Porphyria Network/IPNET), regulators (FDA advocacy, newborn-screening inclusion), and pharmaceutical sponsors running Expanded Access Programs and clinical trials (e.g., givosiran, afamelanotide, dersimelagon, bitopertin with Disc Medicine). Its go-to-market is community-led, combining digital content, peer support, one-on-one navigation, and in-person gatherings to reach a small, globally distributed patient population across the U.S. and Latin America.

Name

United Porphyrias Association

Legal name

United Porphyrias Association

Website

https://porphyria.org

Company type

Private

Founded year

2022

Operating status

Operating

Headcount range

1–10 employees

Short description

United Porphyrias Association is a 501(c)(3) nonprofit that provides education, peer support, advocacy, and patient-navigation resources for individuals and families affected by porphyria across all known rare subtypes in the U.S. and Latin America.

Ownership category

akta.pro rank

Headquarters

HQ city

Bethesda

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Membership: The organization is funded primarily through donations from individuals, foundations, and corporate partners. The website promotes joining through membership/donation.

Go-to-market motion1 record

Distribution channels6 records

Marketing channels8 records

Core offering

United Porphyrias Association is a 501(c)(3) nonprofit patient advocacy organization that provides free education, peer support, advocacy, and patient navigation resources to people affected by porphyria, a group of rare genetic disorders affecting heme synthesis. Its core offerings include Connect UP peer support meetings, UPA One to One ambassador matching, a Porphyria Navigator service, an AHP Drug Safety Database, expert-reviewed educational content, and in-person community gatherings such as Porphyria Palooza.

Product overview

United Porphyrias Association operates porphyria.org as a unified patient advocacy and education platform rather than a traditional software product. The organization offers a comprehensive suite of support programs including ConnectUP peer meetings, UPA One to One ambassador support, Porphyria Navigator patient services, a Drug Safety Database, and the Spotlight Porphyria Blog featuring patient stories (Porphyria Voices), expert Q&A (What's UP Doc?), and research summaries (Summing UP). Additional offerings include Porphyria Palooza annual conferences, monthly Porphyria eNews newsletters, and regional support through UPA Latin America. All services are free and focused on patient education, community connection, and advocacy rather than commercial product functionality.

Differentiator

Problem solved

Functional benefit

Brands

• Porphyria Palooza: Annual patient conference and family event for the porphyria community
• Connect UP
• Porphyria Navigator
• Porphyria Together
• UPA One to One

Products and services

• Connect UP Peer Support Meetings

Quantifiable outcome

• First-ever Porphyria Palooza conference drew 100+ community members
• +2 more outcomes

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• Disc MedicinecoreStrategic or Co-development Partner · 18 April 2026Disc Medicine is working with UPA on an Expanded Access Program (EAP) for bitopertin, an investigational treatment for EPP or XLP ages 12+. UPA is helping gather patient interest and will share updates as the program develops. Bitopertin is not yet approved by any regulatory authority.
• International Porphyria Network (IPNET)coreStrategic or Co-development PartnerIPNET brought together international porphyria experts to develop the May 2026 Lancet Hematology guidelines for managing acute porphyrias (AIP, HCP, VP). The guidelines represent an international effort to evaluate research and develop recommendations for safe and consistent care worldwide.
• Victory JunctionminorStrategic or Co-development PartnerVictory Junction, a year-round camp for children with complex medical conditions, collaborated with Shadow Jumpers and UPA to host the second annual Sun Escape Weekend in May 2025, providing photosensitive children camp experiences without sun exposure.
• Shadow JumpersminorStrategic or Co-development PartnerShadow Jumpers, an organization supporting photosensitive conditions, partnered with UPA and Victory Junction for the Sun Escape Weekend camp program for photosensitive children.
• Porfirias Unidas Latinoamerica (UPA Latam)coreChannel Partner/ Reseller/ DistributorUPA Latam is a patient-led network for Latin America created by Estephany Escarcena to provide Spanish-language resources and support. UPA has provided resources including a fully Spanish-language website at porfiria.lat to increase accessibility and equity for Latin American patients.
• APEX (American Porphyria Expert Collaborative)minorStrategic or Co-development PartnerAPEX has issued statements advocating for consistent and accessible porphyria testing to be available nationwide, with UPA sharing partner updates on their advocacy activities.
• Porphyrias Consortium (NIH)coreStrategic or Co-development PartnerThe Porphyrias Consortium, part of the NIH Rare Diseases Clinical Research Network, is a group of porphyria experts conducting research and training new specialists. UPA works closely with the Consortium whose physicians and investigators support UPA's mission.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Global Genes: A leading rare disease patient advocacy organization focused on building connected, empowered communities. Comparable to UPA in mission and grant-making role for rare disease patient groups.
• EveryLife Foundation for Rare Diseases: Rare disease advocacy organization focused on accelerating biotech innovation and federal policy. Comparable to UPA in policy/regulatory advocacy focus and nonprofit operating model for rare disease communities.
• National Organization for Rare Disorders (NORD): The largest U.S. umbrella organization for rare disease patient advocacy, providing policy, research funding, and member services across hundreds of disease communities. Comparable to UPA as a peer rare-disease advocacy nonprofit operating at greater scale.

Others

• The Porphyrias Consortium (NIH RDCRN): NIH-funded clinical research consortium focused on porphyrias, comprising expert academic centers. Comparable to UPA as a key partner entity in the porphyria ecosystem, though research-focused rather than patient-led.
• National Patient Advocate Foundation: Patient advocacy organization providing case management and policy advocacy for patients with serious illness. Comparable to UPA's Patient Navigator program and federal advocacy engagement.
• Inspire: Online patient community platform hosting condition-specific support groups, including rare disease communities. Comparable to UPA's Porphyria Together community in enabling peer-to-peer patient connection at scale.

Direct peers

• American Porphyria Foundation: The longest-standing U.S. nonprofit dedicated to porphyria advocacy, education, and research support. Directly comparable to UPA as the only other patient-focused porphyria organization operating at national scale, with overlapping scope across all porphyria types.

Regional players

• EURORDIS - Rare Diseases Europe: The European umbrella organization for rare disease patient organizations, representing over 1,000 patient groups across Europe. Comparable to UPA as a peer rare-disease advocacy nonprofit operating in a different geography.

Emerging players

• Genetic Alliance: A nonprofit health advocacy organization engaging individuals, families, and communities to transform health systems around genetic conditions. Comparable to UPA in serving genetic disease communities with education and support programs.
• American Liver Foundation: Patient advocacy nonprofit focused on liver disease, including the acute hepatic porphyrias (AIP, HCP, VP, ADP). Comparable to UPA for the AHP portion of its patient base and in nonprofit operating model.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/UnitedPorphyrias
• Instagraminstagram.com/porphyria.org
• Xx.com/UnitedPorphAssc
• LinkedInlinkedin.com/company/unitedporphyrias

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about United Porphyrias Association