UMDF

What UMDF does

United Mitochondrial Disease Foundation (UMDF) is a 501(c)(3) nonprofit patient advocacy organization founded in 1996 and headquartered in Pittsburgh, Pennsylvania. The organization serves patients, families, clinicians, and researchers affected by mitochondrial disorders through a portfolio of patient support programs, clinical research infrastructure, research funding, and regulatory advocacy. UMDF has cumulatively provided more than $18 million in direct research funding and helped secure an additional $80 million in federal funding through the Department of Defense and the National Institutes of Health.

The organization's core technical and programmatic assets include the mitoSHARE Patient Registry and the mitoSHARE Biorepository (operated in collaboration with COMBINEDBrain), the MSeqDR sequence data resource, REDCap-based clinical study infrastructure, and an active portfolio of natural history and observational studies (MERLIN, POLG, MNGIE). Education and community channels include Mito University, the Ask the Mito Doc and Bench-to-Bedside webinar series, the annual Mitochondrial Medicine Conference (MitoMed), Energy for Life Walk peer-to-peer fundraising events, and a directory of 200+ clinicians. UMDF also maintains a wholly-owned venture philanthropy subsidiary, The Mito Fund, which makes equity investments in biotech companies developing mitochondrial disease therapies (inaugural $500,000 investment in Pierrepont Therapeutics, plus an investment in Khondrion).

UMDF operates as a donation- and grant-funded nonprofit rather than a commercial enterprise. Revenue is generated through individual donations (one-time and recurring, processed via DonorDrive), Energy for Life Walk and Team Activate fundraising events, corporate sponsorships, federal and foundation research grants (DOD, NIH, MDA, Mito Foundation), and unrealized returns on The Mito Fund's biotech equity positions. The organization was instrumental in the FDA accelerated approval of Forzinity (elamipretide) for Barth syndrome and the approval of Kygevvi for thymidine kinase 2 deficiency (TK2d), and it continues to operate a regulatory advocacy function including a planned PCQD Listening Session with the FDA in July 2026.

Name

UMDF

Legal name

United Mitochondrial Disease Foundation

Website

https://umdf.org

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

11–50 employees

Short description

UMDF is a Pittsburgh-based 501(c)(3) patient advocacy organization founded in 1996 that supports individuals and families affected by mitochondrial disorders through patient registries, research funding, educational programs, regulatory advocacy, and a venture philanthropy fund.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy & Rare Disease Support

NAICS

Voluntary Health Organizations (813212), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Membership Organizations (8600), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Donor-Advised Fund (DAF) Sponsors (BPAGAKAF)

akta.pro secondary industry

Site Identification & Feasibility (HLAGACAB)

Keywords

• Patient advocacy services
• Mitochondrial disease research
• Rare disease support
• Clinical trial recruitment
• Medical research grants

Headquarters

HQ city

Pittsburgh

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: One-time and recurring donations from individual supporters, tax-deductible in US Dollars. Managed through DonorDrive platform.
2. Event Fundraising: Energy for Life Walk events and other fundraising activities that engage community members in supporting UMDF's mission.
3. Corporate Partnerships & Sponsorships: Corporate sponsors support Team Activate marathon runners and conference sponsorships.
4. Research Grants: Federal grants from Department of Defense and NIH secured through advocacy efforts, plus foundation grants from organizations like MDA.
5. The Mito Fund (Venture Philanthropy): UMDF's venture philanthropy arm makes equity investments in biotech companies developing mitochondrial disease treatments.

Go-to-market motion1 record

Distribution channels6 records

Marketing channels11 records

Core offering

UMDF is a patient advocacy foundation that supports individuals affected by mitochondrial disease through the mitoSHARE Patient Registry and Biorepository, educational programs (Mito University, Ask the Mito Doc and Bench-to-Bedside webinars), community fundraising events (Energy for Life Walk), the annual Mitochondrial Medicine Conference, clinical trial recruitment, no-cost genetic testing, insurance assistance, and a directory of 200+ mitochondrial disease specialists.

Product overview

UMDF (United Mitochondrial Disease Foundation) is a patient advocacy and research foundation, not a technology company. The organization operates a portfolio of patient support programs and research initiatives including the mitoSHARE Patient Registry and Biorepository, clinical research studies (MERLIN, POLG Natural History, MNGIE), patient education platforms (Mito University, Ask the Mito Doc, Bench-to-Bedside webinars), community events (Energy for Life Walk, Mitochondrial Medicine Conference), and support services (Insurance Assistance, Find a Doctor). UMDF also provides advocacy support for FDA-approved mitochondrial disease treatments including Forzinity (elamipretide) for Barth syndrome and Kygevvi for TK2d. The organization's technology offerings are primarily informational tools such as a Clinical Trials Finder and a conference mobile app, rather than a unified software product with modules.

Differentiator

Problem solved

Functional benefit

Brands

• Energy for Life Walk: UMDF's primary fundraising walk event series to raise awareness and funding for mitochondrial disease research
• mitoSHARE
• The Mito Fund
• Mito University
• Mito Med
• Team Activate

Products and services

• mitoSHARE Patient Registry

Named customers6 records

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration2 records

Feature3 records

Partnerships

19 partnerships are on record, tiered core and minor.

• Mito Foundation (Australia)coreStrategic or Co-development Partner · 1 June 2026Partnership between U.S.-based UMDF and Australia-based Mito Foundation to jointly award research grants. In 2026, awarded eight research grants totaling $500,000 USD through the joint Research Grant Program. This collaboration doubles research impact by combining resources of two of the world's largest mitochondrial disease patient advocacy groups.
• Muscular Dystrophy Association (MDA)coreStrategic or Co-development Partner · 3 December 2025UMDF partnered with MDA to co-fund two new research projects accelerating development of mitochondrial disease treatments. Collaboration leverages MDA's expertise in neuromuscular disease research and UMDF's focus on mitochondrial disorders.
• Barth Syndrome FoundationcoreStrategic or Co-development PartnerUMDF partners with Barth Syndrome Foundation to support patients diagnosed with Barth syndrome. Collaboration includes FDA advocacy for treatments like Forzinity (elamipretide) and joint patient support initiatives.
• COMBINEDBraincoreStrategic or Co-development PartnerUMDF collaborates with COMBINEDBrain to operate the mitoSHARE Biorepository, collecting biological samples from patients with genetically confirmed mitochondrial disease. Samples collected at roadshow events across the US.
• MitoActionminorStrategic or Co-development PartnerCo-hosted FDA listening session on Primary Co-Enzyme Q10 Deficiency (PCQD) with MitoAction. Partnership on regulatory advocacy efforts for mitochondrial disease treatments.
• UCBcoreStrategic or Co-development PartnerPartnership with UCB on TK2d patient resources. UMDF collaborated with UCB to develop the TK2d Early Symptom Reflection Tool to help patients prepare for clinical care conversations. UCB markets Kygevvi for TK2 deficiency treatment.
• MitoWorldminorGTM or Marketing PartnerMonthly partnership for #BeyondTheDisease feature highlighting advances in mitochondrial science and the researchers responsible. Promotes awareness of mitochondrial research through collaborative content.
• CGIminorImplementation/ SI/ Consulting PartnerKristi Dellinger's employer CGI provides pro bono IT and database management services to UMDF, including support for communications and fundraising platforms.
• DonorDrive (Global Cloud, Ltd.)coreTechnology or IntegrationThird-party donation platform providing online donation processing and fundraising capabilities. Manages payment processing including credit card transactions. UMDF uses DonorDrive for Energy for Life Walk fundraising and general donations.
• University of CambridgeminorStrategic or Co-development PartnerCollaborates on MNGIE Retrospective Natural History Study led by Dr. Jelle van den Ameele. Study aims to understand clinical progression and treatment outcomes for MNGIE patients worldwide.
• University of BolognaminorStrategic or Co-development PartnerPartners with Prof. Caterina Garone on MNGIE Natural History Study. Funded by Pierrepont Therapeutics Inc. with ethical approval from Cambridge.
• University of Rochester - Center for Health + TechnologyminorStrategic or Co-development PartnerConducts Mitochondrial Disease Health Index study to develop and validate disease-specific patient-reported outcome measures for clinical trials.
• Children's Hospital of PhiladelphiaminorStrategic or Co-development PartnerConducts pGz modified Jogging Device Study and MM-Coast Study as part of UMDF's Clinical Research Pavilion at MitoMed conference.
• PolG FoundationminorStrategic or Co-development PartnerPartnership with PolG Foundation to fund research and recruit POLG families for patient registry participation and natural history studies.
• Leigh Syndrome International ConsortiumminorStrategic or Co-development PartnerUMDF is part of consortium alongside four other leading mito patient advocacy organizations. Consortium funds research to improve diagnosis, supports treatment development, and strengthens care for Leigh Syndrome patients.
• Leigh Syndrome International ConsortiumminorStrategic or Co-development PartnerUMDF is part of consortium alongside four other leading mito patient advocacy organizations. Consortium funds research to improve diagnosis, supports treatment development, and strengthens care for Leigh Syndrome patients.
• Mitochondrial Care NetworkminorStrategic or Co-development PartnerUMDF supports the Mitochondrial Care Network to help educate clinicians on mitochondrial diseases and advance quality care standards.
• EveryLife FoundationminorStrategic or Co-development PartnerUMDF Support Ambassadors and staff participated in Rare Access Curriculum training led by EveryLife Foundation covering health insurance coverage, Medicare/Medicaid, and appeals processes.
• Team Activate Sponsors (Team Recovery, Payscout, Stark, Tutu School)minorGTM or Marketing PartnerCorporate sponsors supporting UMDF's Team Activate runners in the 2026 Bank of America Chicago Marathon, providing singlet sponsorship and visibility.

Scale indicators11 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• LHON Collective: Patient advocacy organization that partnered with UMDF on regulatory statements regarding idebenone. Direct peer in mitochondrial disease policy advocacy and patient support.
• COMBINEDBrain: Nonprofit organization collaborating with UMDF to operate the mitoSHARE Biorepository. Operates a closely aligned model combining patient registries, biorepositories, and research collaboration for rare neurological diseases.
• Mito Foundation (Australia): Australian mitochondrial disease patient advocacy foundation that jointly funds the 2026 Research Grant Program with UMDF. Operates with a similar mission, peer-to-peer fundraising, and research grant strategy, and is UMDF's primary international counterpart.
• MitoAction: US mitochondrial disease patient advocacy organization co-hosting FDA listening sessions with UMDF. Overlaps directly on patient support, education, and policy advocacy for the same disease community.
• PolG Foundation: Disease-specific foundation partnering with UMDF on POLG research funding and natural history studies. Mirrors UMDF's model of patient registry participation, research grants, and family outreach for a single mitochondrial subtype.
• Muscular Dystrophy Association (MDA): US-based rare disease advocacy organization that co-funds mitochondrial research grants with UMDF. Operates a comparable model combining patient services, research funding, clinical care network, and advocacy across neuromuscular diseases including mitochondrial disorders.
• Barth Syndrome Foundation: Disease-specific patient advocacy foundation partnering with UMDF on FDA advocacy for Forzinity (elamipretide) and patient support. Operates the same patient advocacy / research funding model focused on a mitochondrial subtype.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella US organization of which UMDF is a member. Provides grants, advocacy infrastructure, and policy coordination across 300+ rare disease patient organizations, overlapping with UMDF on advocacy, research funding, and FDA engagement.
• Cystic Fibrosis Foundation: Larger rare disease patient advocacy foundation widely cited as the pioneer of venture philanthropy in patient advocacy. UMDF's The Mito Fund follows the CFF model of equity investments in therapeutic developers; comparable mission and organizational structure.
• EveryLife Foundation for Rare Diseases: US rare disease policy organization that trains UMDF Support Ambassadors on insurance navigation and Medicare/Medicaid appeals. Comparable policy/advocacy function and overlapping mission in accelerating rare disease therapeutic development.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/c/theUMDF
• Facebookfacebook.com/united-mitochondrial-disease-foundation-202570833099467
• LinkedInlinkedin.com/company/theumdf
• Instagraminstagram.com/umdf
• TikToktiktok.com/@mito.tok_umdf
• Xx.com/umdf

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments1 record

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about UMDF