TSC Alliance

What TSC Alliance does

The TSC Alliance, founded in 1974 and headquartered in Silver Spring, Maryland, is the leading U.S. nonprofit dedicated to tuberous sclerosis complex (TSC), a rare genetic disease affecting multiple organ systems across a patient's lifespan. The organization pursues a three-pronged mission: catalyzing new treatments, driving research toward a cure, and expanding access to lifelong support for the TSC community. Its programmatic portfolio spans research funding, clinical-care support, community engagement, and federal advocacy.

The TSC Alliance's core infrastructure consists of three integrated research platforms: the Natural History Database (capturing clinical data from 2,700+ TSC patients across 22+ U.S. clinical sites via the StudyTRAX platform), the Biosample Repository (housing human DNA, plasma, blood, and remnant surgical tissues linked to the database), and the Preclinical Consortium (a partnership with academic researchers, industry sponsors, and CROs including PsychoGenics and Porsolt for EEG-enabled animal-model drug testing). The organization funds early-career investigators via a Research Grant and Postdoctoral Fellowship Program with awards up to $150,000 over two years. Patient-facing tools include the TSC Navigator (under development), TSC Academy, the TSC Clinical Trial Finder, Anya's Accelerator, and the Reproductive and Perinatal Health Initiative. Community engagement is delivered through a nationwide volunteer network, Support Navigators, TSC Clinics and Centers of Excellence, Global Alliances, biennial TSC World Conferences, and annual events such as Comedy for a Cure.

The TSC Alliance operates a nonprofit membership model in which membership dues are not required but members support programs. Revenue is sourced from individual donations, foundation grants (including a $500K three-year grant from the Anita Bhatia Foundation for Tomorrow in March 2026), corporate sponsorships from pharmaceutical companies (Jazz Pharmaceuticals, Nobel Pharma, LivaNova, Mallinckrodt, Marinus Pharmaceuticals, Upsher-Smith Laboratories) and other corporations (MassMutual), and federal advocacy appropriations — most notably $131M cumulatively via the Congressionally Directed Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense and NIH. The organization holds BBB Accredited Charity, Charity Navigator Four Star (2024), Candid Platinum Transparency (2023), and NORD member credentials, and has invested $44M+ in TSC research since 1984 alongside 3 FDA-approved drugs for TSC and 6 FDA-approved treatments for aspects of the disease.

Name

TSC Alliance

Legal name

National Tuberous Sclerosis Association

Website

https://tscalliance.org

Company type

Private

Founded year

1974

Operating status

Operating

Headcount range

11–50 employees

Short description

The TSC Alliance is a 501(c)(3) nonprofit founded in 1974 that advances research, clinical care, and community support for individuals and families affected by tuberous sclerosis complex (TSC), operating the Natural History Database, Biosample Repository, and Preclinical Consortium as core research infrastructure.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy & Research

NAICS

Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

Allied Health & Rehab Referral Platforms (PT/OT/SLP) (HLALALAI)

Keywords

• Rare disease advocacy
• Patient support services
• Research grant funding
• Clinical research database
• Nonprofit health organization

Headquarters

HQ city

Silver Spring

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Grants: The organization receives donations from individuals, families, and corporate sponsors, as well as grants from foundations and government agencies including the Department of Defense TSCRP and NIH.
2. Corporate Sponsorships: Financial and in-kind support from pharmaceutical companies and corporations for educational events, conferences, social media, publications, and Community Alliance initiatives.
3. Research Funding: Federal appropriations from government advocacy, including Tuberous Sclerosis Complex Research Program (TSCRP) and other Congressionally Directed Medical Research Programs.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

TSC Alliance is a nonprofit organization that funds and operates research infrastructure (Natural History Database, Biosample Repository, Preclinical Consortium) and delivers patient/family support programs (TSC Navigator, TSC Academy, Support Navigators, Clinic network) for individuals affected by tuberous sclerosis complex. It also administers research grants and postdoctoral fellowships, advocates for federal TSC research appropriations, and connects patients to clinical trials through its TSC Clinical Trial Finder.

Product overview

The TSC Alliance operates as an integrated nonprofit platform combining research infrastructure, clinical support services, educational resources, and community engagement programs. Its core offerings include the Natural History Database (capturing clinical data from 2,700+ participants), the Biosample Repository (housing DNA and tissue specimens), and the Preclinical Consortium (enabling drug testing through industry-academia partnerships). The organization funds early-career researchers via its Grant and Postdoctoral Fellowship Program, supports individuals through the TSC Navigator guidance tool and TSC Academy educational courses, and facilitates clinical trial access via the TSC Clinical Trial Finder. Research participation initiatives include Anya's Accelerator and the Reproductive and Perinatal Health Initiative, while community engagement spans annual events like Comedy for a Cure and the biennial TSC World Conference.

Differentiator

Problem solved

Functional benefit

Products and services

• Natural History Database A research database capturing longitudinal clinical data from over 2,700 people with TSC across 22 U.S.-based clinical sites since 2006, available to investigators to answer research questions and identify clinical trial participants.
• Biosample Repository A repository of human biological materials including DNA, blood, plasma, and remnant surgical tissues linked to clinical data from the Natural History Database, enabling biomarker discovery and drug testing for TSC researchers.
• Preclinical Consortium A partnership program with TSC researchers in industry and academia facilitating evaluation of novel and repurposed therapeutics in animal models of TSC, including EEG monitoring and tumor measurement via CRO partners PsychoGenics and Porsolt.
• Research Grant and Postdoctoral Fellowship Program A grant funding program for early-career researchers supporting basic and translational TSC research, with awards up to $150,000 over two years including postdoctoral fellowships and research grants in four high-priority areas.
• TSC Navigator An online guidance tool to help individuals and families navigate the complexities of TSC across the lifespan, proactively manage care, and live their fullest lives.
• TSC Academy An educational platform offering online courses such as 'Introduction to Clinical Trials' to build knowledge for the TSC community, healthcare professionals, and researchers.
• TSC Clinical Trial Finder An online tool enabling individuals with TSC to find and participate in TSC-related clinical trials.
• Anya's Accelerator A research participation initiative enabling individuals with TSC to contribute to clinical studies and accelerate the pace of TSC research.
• Reproductive and Perinatal Health Initiative An initiative focused on identifying priorities for maternal-fetal pregnancy-related complications in TSC and establishing recommendations for reproductive and perinatal care.

Quantifiable outcome

• $44M+ invested in TSC research since 1984
• +4 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Apertura Gene TherapycoreStrategic or Co-development Partner · 5 May 2026Collaboration to advance gene therapy programs designed to treat TSC using Apertura's novel TfR1 CapX AAV capsid technology designed to cross the blood-brain barrier and deliver functional copies of TSC1 or TSC2 genes. The partnership leverages the TSC Alliance's Preclinical Consortium infrastructure to conduct rigorous preclinical testing ahead of potential clinical trials. Addresses neurological manifestations of TSC, particularly treatment-resistant epilepsy affecting approximately two-thirds of the roughly 85% of TSC patients who experience seizures.
• PsychoGenics, Inc.coreTechnology or IntegrationContract research organization partner for the TSC Preclinical Consortium, providing 24/7 EEG monitoring and analysis capabilities for epilepsy and behavior studies in animal models of TSC.
• PorsoltcoreTechnology or IntegrationContract research organization partner for the TSC Preclinical Consortium, providing longitudinal tumor volume measurement and other assays for tumor models of TSC.
• Van Andel InstitutecoreTechnology or IntegrationPartner for hosting murine biospecimens (liver, kidney, brain, plasma) from the TSC Biosample Repository and conducting transgenic work for additional models.
• Jazz PharmaceuticalsminorOthersCorporate sponsor providing financial support for TSC Alliance programs and initiatives.
• Nobel PharmaminorOthersCorporate sponsor for TSC Alliance (associated with faceforwardwithtsc.com).
• LivaNovaminorOthersCorporate sponsor supporting TSC Alliance programs.
• Mallinckrodt PharmaceuticalsminorOthersCorporate sponsor supporting TSC Alliance programs.
• Marinus PharmaceuticalsminorOthersCorporate sponsor supporting TSC Alliance programs.
• Upsher-Smith LaboratoriesminorOthersCorporate sponsor supporting TSC Alliance programs.
• MassMutualminorOthersCorporate sponsor supporting TSC Alliance programs.
• Global Alliances (International TSC Organizations)minorStrategic or Co-development PartnerNetwork of international TSC organizations supporting TSC communities around the world. Dedicated volunteers work at every Global Alliance, and the TSC Alliance partners with them to create and implement plans to better meet the needs of people navigating TSC outside of the United States.

Scale indicators5 records

Recent moves5 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the U.S. rare disease community, of which TSC Alliance is a member organization. Provides macro-level policy advocacy and shared infrastructure but does not focus on a single disease.
• American Cancer Society: Large-scale disease advocacy nonprofit with comparable pillars (research funding, patient support, advocacy). Operates at much greater scale and across many disease types rather than a single rare condition.
• March of Dimes: Established health advocacy nonprofit with research funding, federal appropriations, and patient education programs. Comparable in advocacy and research-funding functions but focused on maternal/infant health rather than a single rare disease.

Direct peers

• Muscular Dystrophy Association: Long-established rare disease advocacy nonprofit with research funding, a multi-disease clinic network, and corporate sponsor relationships. Directly comparable as a multi-decade patient advocacy org operating research, care, and advocacy programs for a defined disease population.
• Epilepsy Foundation: Patient advocacy organization for epilepsy, the primary neurological manifestation of TSC affecting ~85% of patients. Overlaps substantially in target patient population, pharma sponsor base (Jazz, LivaNova, Marinus overlap), and seizure-focused research priorities.
• ALS Association: Disease-specific patient advocacy organization funding research grants, operating a clinical network, and running advocacy campaigns. Comparable in mission structure (research + care + advocacy), federal appropriations work, and Walk/ride-style fundraising events.
• Children's Tumor Foundation: Rare disease (neurofibromatosis) patient advocacy organization with research infrastructure including biosample and data assets, clinical trial networks, and federal advocacy. Closely comparable as a single-gene rare disease nonprofit with the same research/care/advocacy framework.
• Cystic Fibrosis Foundation: Single-disease patient advocacy nonprofit that has built an analogous research-funding and clinical-trial-enabling model for cystic fibrosis, including substantial pharma partnerships and a venture philanthropy arm. Highly comparable as a rare genetic disease nonprofit with research infrastructure, clinical care network, and advocacy operations.

Emerging players

• Autism Science Foundation: Research-focused nonprofit addressing autism and related neurodevelopmental conditions, including TAND (TSC-associated neuropsychiatric disorders), which is a key TSC Alliance research priority. Partial thematic overlap in translational neurodevelopmental research.

Regional players

• Tuberous Sclerosis Association (UK): UK-based counterpart to TSC Alliance serving the same disease population in a different geography. Operates research funding and patient support programs aligned with TSC Alliance's mission and is part of the Global Alliances network.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/tscalliance
• YouTubeyoutube.com/tscalliance
• Facebookfacebook.com/tscalliance
• LinkedInlinkedin.com/company/697362/admin
• Instagraminstagram.com/tscalliance
• TikToktiktok.com/@tscalliance

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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

Frequently asked questions about TSC Alliance