What TANGO2 Research Foundation does

The TANGO2 Research Foundation is a 501(c)(3) nonprofit organization founded in 2018 by Kasha and Mike Morris, the parents of a child with TANGO2 Deficiency Disorder (TDD), and headquartered in Hadlyme, Connecticut. It is the only organization globally exclusively focused on TDD, an ultra-rare genetic metabolic disease affecting fewer than 150 known patients worldwide, roughly half of whom do not survive past age nine. The Foundation operates a community-led go-to-market model that connects affected families, clinicians, and researchers through patient registries, support groups, regional coordinators, and annual family conferences, while channeling donations and grants into a research portfolio that has deployed over $1 million in TDD science funding since inception.

The Foundation's core technical and programmatic assets include the TDD Natural History Study (a prospective longitudinal study led by Baylor College of Medicine investigators with 73+ baseline patients), a TDD Patient Registry for research recruitment, the TANGO2 Deficiency Disorder Research Learning Network (an online researcher/clinician/family forum), clinical care guidelines incorporated into GeneReviews, a TDD Clinician Hotline, the Rare Care Chronicles podcast, and a multi-cycle Research Funding Portfolio with grants supporting gene therapy, lipid metabolism, and therapeutic development projects. Underlying research infrastructure is supported by partnerships with Baylor College of Medicine, NIH/NCATS, and Concordia University (which conducted pioneering work on vitamin B5 as a TDD treatment).

The Foundation's revenue model is diversified across four streams: individual and family donations (including a Monthly Hero recurring program), institutional grants (notably a $250,000 PCORI Engagement Award, CZI Rare As One membership, and consecutive RAREis/Amgen Global Advocate Grants), corporate sponsorships and matching gifts (e.g., Travelers Insurance), and merchandise sales. The Morris family committed $2.5 million in 2024 to be distributed over 3-5 years, representing the largest single donor anchor. All clinical, educational, and support services are provided free of charge to families; the only fee-based offering is a $15 professional registration for the annual CME-accredited TANGO2 Research Symposium.

Name

TANGO2 Research Foundation

Legal name

TANGO2 Research Foundation

Website

https://tango2research.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Short description

The TANGO2 Research Foundation is a 501(c)(3) nonprofit founded in 2018 that accelerates research, supports families, and advances clinical care for TANGO2 Deficiency Disorder, an ultra-rare genetic metabolic disease affecting fewer than 150 known patients worldwide.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Scientific Research and Development Services (5417)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

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

akta.pro secondary industry

Research & Science Grantmaking Foundations (BPAGAKAI)

Keywords

• Rare disease research
• Patient advocacy foundation
• Natural history study
• Research grant funding
• Community patient registry

Headquarters

HQ city

Hadlyme

HQ country

United States

HQ region

North America

Offices1 record

Markets served

Offering type

Services

Cost components

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

Revenue model

1. Individual and Family Donations: The foundation relies on donations from individuals, families, and supporters. This includes one-time donations, monthly giving programs (Monthly Hero), birthday fundraising, and general fund-raising campaigns.
2. Grants and Awards: The foundation receives grants from institutional funders including PCORI ($250,000 Eugene Washington Engagement Award), Horizon Therapeutics/Amgen ($5,000 RAREis Global Advocate Grant), and Chan Zuckerberg Initiative (CZI Rare As One).
3. Corporate Sponsorships and Matching Gifts: Corporate partners sponsor events and campaigns; employers match employee donations (e.g., Travelers Insurance matching donations).
4. Merchandise Sales: The foundation sells branded merchandise (apparel, accessories) through its website to generate revenue.

Pricing tiers

Go-to-market motion1 record

Distribution channels2 records

Marketing channels10 records

Core offering

The TANGO2 Research Foundation is a patient-led nonprofit that accelerates research, supports families, and advocates for those affected by TANGO2 Deficiency Disorder (TDD), a rare genetic metabolic disease. It operates a TDD Natural History Study, a Patient Registry, a Research Learning Network online forum, clinical care guidelines and a clinician hotline, a multi-cycle research grant program, the Rare Care Chronicles podcast, and annual family conferences and fundraising campaigns.

Product overview

The TANGO2 Research Foundation operates as a patient-led rare disease organization offering a portfolio of interconnected research and support services rather than a unified software product. The core offerings include the TDD Natural History Study (prospective patient tracking research), the TDD Patient Registry (research recruitment database), and the TANGO2 Research Learning Network (online stakeholder forum). Supporting these research infrastructure elements are the Rare Care Chronicles Podcast (educational content), TDD Clinical Care Guidelines and Clinician Hotline (healthcare provider resources), and the Research Funding Portfolio (grant program for scientists). Community engagement is facilitated through the annual TANGO2 Family Conference and the Shine a Light on TANGO2 fundraising campaign. These services collectively advance the Foundation's mission to accelerate TANGO2 research and support affected families.

Differentiator

Problem solved

Functional benefit

Brands

• TANGO2 Australia: An affiliate organization focused on supporting families affected by TANGO2 Deficiency Disorder in Australia and contributing to research efforts in close collaboration with T2RF.

Products and services

• TDD Natural History Study

Quantifiable outcome

• Over $1 million invested in TDD research since 2018, across multiple grant cycles
• +2 more outcomes

Named customers6 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eight partnerships are on record, tiered core and minor.

• Patient-Centered Outcomes Research Institute (PCORI)coreStrategic or Co-development PartnerPCORI awarded the TANGO2 Research Foundation a $250,000 Eugene Washington Engagement Award over two years. The award supports building patient-centered outcomes research capacity by developing a skilled community of patients, caregivers, and stakeholders involved in PCORI's work.
• Chan Zuckerberg Initiative (CZI) Rare As OnecoreStrategic or Co-development PartnerT2RF was selected as a Cycle One grantee of the CZI Rare As One initiative, joining a global network of patient-driven rare disease organizations. Foundation leaders attended the 2023 CZI Science in Society Annual Meeting as panelists.
• Baylor College of MedicinecoreStrategic or Co-development PartnerBaylor College of Medicine is a key institutional partner providing CME accreditation for the TANGO2 Research Symposium. Dr. Christina Miyake leads the TDD Natural History Study at Baylor. Baylor investigators were among those who first described TANGO2 disorder in 2016.
• National Institutes of Health / NCATScoreStrategic or Co-development PartnerDr. Elizabeth Ottinger from NCATS (NIH) spoke at the 2023 TANGO2 Symposium on preclinical therapeutic development for rare diseases. NCATS programs (TRND, BrIDGs, PaVe-GT) support TDD therapeutic translation.
• Concordia UniversitycoreStrategic or Co-development PartnerDr. Michael Sacher's laboratory at Concordia University conducted pioneering research on vitamin B5 as a treatment for TDD, demonstrating benefits in Drosophila and human cell models. This research has been directly incorporated into clinical practice.
• TANGO2 AustraliaminorStrategic or Co-development PartnerTANGO2 Australia is an affiliate organization founded by T2RF board member David Longman alongside three Australian families. It supports Australian TDD families and contributes to research in close collaboration with T2RF.
• Uplifting AthletesminorGTM or Marketing PartnerUplifting Athletes partnered with T2RF to award $20,000 research grants to TDD researchers (Dr. Nishanthi Mathiyalagan and Dr. Andrea Wilderman).
• Global GenesminorGTM or Marketing PartnerT2RF leaders facilitated a panel discussion at the Global Genes RARE Advocacy Summit highlighting the importance of natural history studies in rare disease.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• ALS Association: National patient-led foundation that funds research, builds patient registries and clinical networks, and supports families affected by a single rare, fatal disease — structurally comparable to TANGO2 Research Foundation.
• Cystic Fibrosis Foundation: Patient-led disease-specific foundation that funds CF research, operates a patient registry, supports families, and partners with biotech — the gold-standard model for a single-disease rare-disease foundation analogous to TANGO2 Research Foundation's strategy.
• Cure SMA: Family-founded organization funding spinal muscular atrophy research and supporting affected families, including building registry and natural history capabilities that helped drive recent therapeutic approvals — directly analogous in scale and mission.
• National Niemann-Pick Disease Foundation: Disease-specific foundation for an ultra-rare inherited metabolic disorder, supporting patient families, funding research, and maintaining a patient registry — closely parallel to TANGO2's structure and population size.
• Parent Project Muscular Dystrophy: Family-founded nonprofit driving research, clinical care standards, and patient advocacy for a single rare genetic disease (Duchenne), paralleling T2RF's family-driven, research-funding, and clinical-guideline focus.
• Mucolipidosis Type IV Foundation: Family-led, ultra-rare metabolic-disease foundation funding research and supporting a similarly small global patient population — directly comparable in mission, scale, and resource model.

Broad incumbents

• Global Genes: Broad rare-disease advocacy organization that convenes the RARE Advocacy Summit and supports rare-disease patient foundations — T2RF is a network participant and panelist at its summit.
• Muscular Dystrophy Association: Established large rare-disease foundation that combines research funding, clinical care networks, and family services across many neuromuscular conditions — a reference point for the scale-up trajectory possible for a single-disease organization.
• National Organization for Rare Disorders (NORD): Umbrella advocacy and research-support organization for all rare diseases; provides grants, registries, and policy advocacy that T2RF-affiliated organizations (e.g., PCORI) participate in or benchmark against.

Emerging players

• RARE Science: Smaller rare-disease nonprofit focused on accelerating therapeutic discovery for ultra-rare pediatric conditions through patient registries and research partnerships — comparable stage and patient-scale focus.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/tango2research
• YouTubeyoutube.com/tango2researchfoundation
• Facebookfacebook.com/tango2research
• LinkedInlinkedin.com/company/tango2-research-foundation
• Instagraminstagram.com/tango2researchfoundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles17 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about TANGO2 Research Foundation