What MitoAction does

MitoAction is a U.S. 501(c)(3) nonprofit organization founded in 2007 and headquartered in Novi, Michigan, that delivers support, education, outreach, and advocacy services to patients and families affected by mitochondrial disease and fatty acid oxidation disorders (FAODs). Its core programmatic portfolio includes the Mito411 peer support hotline (1-888-MITO-411), recurring condition-specific support calls (Weekly, Men's, FAOD, POLG, MELAS, CPEO & Me), MitoSocials and MitoPlaydates, the Monthly Expert Series and Wondering Wednesdays webinars, the Energy in Action podcast, and community fundraising walks (Energy Walks in NY, MA, TX, FL, CA) plus the annual International Metabolic Conference for FAOD families. Complementary programs include the Dalia's Wish wish-granting initiative, the Matthew Harty Camper Fund and Scholarship (45+ scholarships awarded), Marcel's Way Family Fund, Positive Peach Packages, Mito Champions volunteer program, and a searchable Mitochondrial Disease Doctor Directory covering all 50 U.S. states with telehealth options.

The organization's technology centerpiece is the MyMito App, described as the first and only HIPAA-compliant digital health platform purpose-built for mitochondrial disease, enabling patients and caregivers to manage care, track symptoms, and coordinate with their care team. Distribution also runs through an e-commerce shop (79 SKUs including the Liney's Lovies sub-brand, priced $9.50–$75) and a content library of 125+ recorded expert presentations. MitoAction co-develops the Mitochondrial Care Network with the United Mitochondrial Disease Foundation and Mitochondrial Medicine Society, connecting 18 Mitochondrial Medicine Centers and 3 affiliate sites, and maintains collaborative relationships with at least six clinical-stage biotech and pharma companies (Ultragenyx, Tisento, Stealth Bio, Khondrion, Pretzel, BPGbio) plus the POLG Foundation and INFORM.

The revenue model is non-commercial: services are provided free of charge and the operating budget is funded through tax-deductible individual donations (Federal Tax ID 55-0899427), corporate sponsorships and grants, fundraising events (Energy Walks, Derby Day Benefit, Giving Tuesday), matching gifts, and merchandise sales. Go-to-market is community-led and event-driven — peer support calls, educational webinars, the podcast, social media (Facebook, Instagram, X), and signature in-person events — rather than paid acquisition. No headcount, revenue, or financial statements are publicly disclosed.

Name

MitoAction

Legal name

MitoAction

Website

https://mitoaction.org

Company type

Private

Founded year

2007

Operating status

Operating

Headcount range

1–10 employees

Short description

MitoAction is a U.S. 501(c)(3) nonprofit (founded 2007) that provides support, education, and advocacy services — including the MyMito HIPAA-compliant app, Mito411 hotline, peer support calls, and Energy Walks — to patients and families affected by mitochondrial disease and fatty acid oxidation disorders.

Ownership category

akta.pro rank

Headquarters

HQ city

Boston

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: Tax-deductible donations from individual donors, families, and supporters. Donations can be made online through their platform or by mail. Federal tax ID: 55-0899427.
2. Merchandise Sales: The organization operates an online shop selling branded merchandise including apparel (mugs, t-shirts, hoodies, socks), accessories (hats, beanies), and awareness items. Products are priced between $9.50 and $75.00.
3. Event Fundraising: Revenue generated from events including Energy Walks, Derby Day Benefit, and other fundraising activities. Corporate sponsorships from companies like BPGbio support specific events.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels6 records

Core offering

MitoAction is a nonprofit organization that delivers direct support, education, outreach, and advocacy services to individuals and families affected by mitochondrial disease. Its portfolio includes a mobile application (MyMito App), a telephone support hotline (Mito411), educational webinars and podcasts, peer support calls, and community events, most of which are offered free of charge to patients and caregivers.

Product overview

MitoAction is a nonprofit organization offering a comprehensive portfolio of programs, services, and digital tools for the mitochondrial disease community. The core offerings include the MyMito App (a HIPAA-compliant mobile platform for health management and care team coordination), the Mito411 support hotline, various peer support programs (Support Calls, MitoSocials, MitoPlaydates), educational resources (Monthly Expert Series, Energy in Action Podcast, New Patient Kits, Wondering Wednesdays), community fundraising events (Energy Walks, International Metabolic Conference), and access to a Mitochondrial Care Network of specialized doctors. The organization also operates a merchandise shop with products like Liney's Lovies. These offerings work together to provide support, education, outreach, and advocacy for children and adults living with mitochondrial disease and fatty acid oxidation disorders.

Differentiator

Problem solved

Functional benefit

Products and services

• MyMito App

Named customers1 record

Segments4 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Ten partnerships are on record, tiered core and minor.

• United Mitochondrial Disease FoundationcoreStrategic or Co-development PartnerCollaborates with United Mitochondrial Disease Foundation as part of the Mitochondrial Care Network initiative to improve quality of mitochondrial patient care and implement best practices and standards of care.
• Mitochondrial Medicine SocietycoreStrategic or Co-development PartnerCollaborates with the Mitochondrial Medicine Society (MMS) on the Mitochondrial Care Network, which brings together mitochondrial physicians to establish standards of care and advance clinical practice.
• The POLG FoundationcoreStrategic or Co-development PartnerCollaboration on POLG Support Call series, a support group for individuals and families affected by POLG-related mitochondrial disorders.
• UltragenyxminorStrategic or Co-development PartnerPartnership on clinical trial information and patient resources for FAODs including MCADD. Ultragenyx sponsors study recruitment and provides updates on clinical development programs.
• Tisento TherapeuticsminorStrategic or Co-development PartnerCollaboration on MELAS patient-focused drug development meeting and clinical trial information for mitochondrial disease treatments.
• Stealth Bio TherapeuticsminorStrategic or Co-development PartnerCollaboration related to FDA approval of FORZINITY (elamipretide) for Barth syndrome, the first approved mitochondria-targeted therapeutic.
• KhondrionminorStrategic or Co-development PartnerPartnership related to clinical trials for sonlicromanol in MELAS and other mitochondrial DNA mutations.
• BPGbiominorGTM or Marketing PartnerCorporate sponsor of MitoAction Energy Walk at Boston's Franklin Park Zoo. Represents pharmaceutical/biotech company commitment to mitochondrial disease community.
• Pretzel TherapeuticsminorStrategic or Co-development PartnerPartnership related to Phase 1 clinical study for PX579, a therapeutic in bioenergetics restoration.
• INFORM (International Network for Fatty Acid Oxidation Research and Management)coreStrategic or Co-development PartnerPartnership with Dr. Jerry Vockley and Dr. Melanie Gillingham to present the International Metabolic Conference, bringing together experts to present to patients, families, caregivers, and clinicians about FAOD disease management and clinical trials.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• Global Genes: U.S. rare-disease patient advocacy umbrella offering toolkits, RARE summits, and grants; overlapping audience but broader scope than MitoAction's mito-specific niche.

Direct peers

• United Mitochondrial Disease Foundation: Largest U.S. patient advocacy organization focused on mitochondrial disease; directly comparable mission (support, research, education) and an explicit partner of MitoAction on the Mitochondrial Care Network.
• Children's Mitochondrial Disease Network: U.K.-based support network for families affected by mitochondrial disease, offering family liaison and educational resources comparable to MitoAction's Mito411 and New Patient Kit.
• The Champ Foundation: U.S. nonprofit dedicated to a specific mitochondrial subtype (ATAD3A); smaller, narrowly focused advocacy peer operating a similar support/education/research model.

Broad incumbents

• National Organization for Rare Disorders (NORD): U.S. umbrella advocacy organization for all rare diseases; MitoAction is a NORD member and competes for the same donor/grant pool while operating a narrower disease focus.
• Genetic Alliance: Nonprofit coalition advancing genetics policy and patient engagement; serves as a peer umbrella and policy advocate that overlaps with MitoAction's medical-professional and policy work.
• EURORDIS – Rare Diseases Europe: European alliance of rare-disease patient organizations across 70+ countries; broader incumbent that MitoAction is a member of and that competes for international advocacy mindshare.

Regional players

• MitoCanada: Canadian mitochondrial disease patient advocacy nonprofit offering support, education, and awareness programs; mirrors MitoAction's community-led model in a different geography.
• Mito Foundation: Australian mitochondrial disease organization providing patient support, research funding, and awareness; another geographic mirror of MitoAction's integrated support-plus-education model.
• The Lily Foundation: Leading U.K. mitochondrial disease charity funding research and supporting patients/families; structurally analogous to MitoAction but serving a different national market.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/mitoaction
• Facebookfacebook.com/mitoaction
• Instagraminstagram.com/mitoaction

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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

M&A

Investments

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

Frequently asked questions about MitoAction