Dysautonomia Information Network

What Dysautonomia Information Network does

The Dysautonomia Information Network (DINET) is a 501(c)(3) nonprofit patient advocacy organization founded around 2003, serving individuals affected by dysautonomia disorders — primary autonomic system conditions including Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF), Multiple System Atrophy (MSA), Ehlers-Danlos Syndrome (EDS), and post-COVID autonomic dysfunction. The organization addresses a market of over one million Americans with primary autonomic disorders who face systematic challenges including misdiagnosis, limited specialist access, and scarce educational resources. DINET provides its services entirely free of charge through an Invision Community-powered website that combines a content library, a discussion forum with over 276,000 accumulated posts, a searchable physician directory of 198 specialists across the United States, a quarterly newsletter (Dysautonomia News) published since 2003, a YouTube speaker series (DINET Dyscussions), and a curated clinical trials registry.

DINET's core products are informational rather than transactional: an extensive article library (21 POTS articles, 17 general dysautonomia articles, 8 Long-COVID articles), patient information guides for ER preparation and family/friend education, physician brochures distributed on request, member stories, and a link directory of 270+ external resources. Operational reach is augmented by formal partnerships with the NIH All of Us Research Program, PCORI, Mayo Clinic, Vanderbilt University Autonomic Dysfunction Center, University of Pittsburgh/UPMC, Dysautonomia International, and The Mighty. A Medical Advisory Panel of autonomic disorder specialists, including Dr. Satish Raj, Dr. Svetlana Blitshteyn, Dr. Nicholas Tullo, and Dr. Julian Stewart, provides clinical oversight and content review.

The business model is donation-funded: DINET operates as a volunteer-run nonprofit accepting contributions via PayPal and selling DINET-branded merchandise through a SquareUp storefront. There are no membership fees, no advertising, no paid products, and no disclosed revenue figures. The organization distributes resources globally through its website while maintaining a U.S.-focused physician directory and research-partnership footprint.

Name

Dysautonomia Information Network

Legal name

Dysautonomia Information Network

Website

https://dinet.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

1–10 employees

Short description

DINET is a 501(c)(3) nonprofit patient advocacy organization, founded in 2003, that provides free educational resources, community forums, a 198-physician directory, and research updates for dysautonomia patients, caregivers, and healthcare providers.

Ownership category

akta.pro rank

Headquarters

HQ city

Swanzey

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: DINET generates revenue through donations via PayPal (fundraiser/charity) and presumably membership fees, operating as a 501(c)(3) nonprofit charitable organization providing free educational resources to the dysautonomia community.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

Dysautonomia Information Network (DINET) operates a free, donation-supported online information and community platform serving dysautonomia patients, caregivers, and healthcare providers. Core deliverables include condition-specific educational articles, peer-support discussion forums, a 198-physician specialist directory, quarterly newsletters, patient information guides, physician educational brochures, a clinical studies registry, and curated external resource links — all distributed through the dinet.org website and Invision Community platform.

Product overview

Dysautonomia Information Network (DINET) operates a community-driven information platform providing educational resources, peer support forums, and clinical trial information for individuals affected by dysautonomia disorders. The core offering consists of the DINET website and community platform built on Invision Community software, featuring discussion forums, an extensive information resources library covering conditions such as POTS (Postural Orthostatic Tachycardia Syndrome), NCS, PAF, MSA, EDS, and Long-COVID syndrome, a searchable physician directory with 198 specialists, quarterly newsletters published since 2003, the DINET Dyscussions video speaker series, patient information guides, physician brochures for medical education, clinical studies registry, member stories section, and a curated link directory. The platform connects patients, caregivers, and medical professionals through forums, newsletters, and research collaboration opportunities.

Differentiator

Problem solved

Functional benefit

Products and services

• DINET Website and Community Platform
• Discussion Forums
• Information Resources Library
• POTS Information Center
• Long-COVID Syndrome Resources

Quantifiable outcome

• Over 1 million Americans impacted by primary autonomic system disorders served by DINET resources

Named customers3 records

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

Eight partnerships are on record, tiered core and minor.

• NIH All of Us Research ProgramcoreStrategic or Co-development Partner · 9 October 2018DINET is a Champion Partner of the NIH All of Us Research Program, an ambitious precision medicine initiative gathering health information from 1 million or more people. DINET supports recruitment of dysautonomia patients into this research program to advance understanding of rare disorders.
• The MightyminorGTM or Marketing PartnerThe Mighty is a story-based health community that shares DINET's mission of raising awareness for chronic health conditions. The partnership helps DINET reach a broader audience of people facing diseases and disabilities through real patient stories.
• PCORI (Patient-Centered Outcomes Research Institute)coreStrategic or Co-development PartnerDINET partnered with PCORI, the University of Pittsburgh, and UPMC on the MyPaTH Story Booth Project to collect patient and caregiver experiences with dysautonomia. The research aims to develop studies addressing topics important to patients and caregivers.
• Dysautonomia InternationalcoreStrategic or Co-development PartnerDINET co-sponsors the Big POTS Survey with Dysautonomia International and Vanderbilt University, led by Dr. Satish Raj. This large-scale research survey examines underlying causes, risk factors, treatments, and the economic, educational, and social impact of POTS on patients and families.
• Mayo CliniccoreStrategic or Co-development PartnerMayo Clinic conducts multiple dysautonomia studies that DINET promotes to its community, including studies on autonomic disorder causes, DNA collection, Ivabradine for POTS treatment, and Pyridostigmine comparison studies.
• Vanderbilt University Autonomic Dysfunction CentercoreStrategic or Co-development PartnerVanderbilt's Autonomic Dysfunction Center conducts pathophysiology and therapy studies for orthostatic intolerance that DINET promotes. Dr. Satish Raj, affiliated with Vanderbilt, serves on DINET's Medical Advisory Board.
• University of Pittsburgh / UPMCcoreStrategic or Co-development PartnerPartners with DINET and PCORI on the MyPaTH Story Booth Project to collect patient stories about dysautonomia experiences, coping strategies, and healthcare system interactions.
• University of North Carolina PembrokeminorStrategic or Co-development PartnerDINET members are encouraged to participate in UNC Pembroke's IRB-approved study on sleep disturbances, pain, and fatigue in dysautonomia patients.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest U.S. rare disease umbrella advocacy organization. While not dysautonomy-specific, NORD represents overlapping patient communities and competes for rare disease research funding and policy attention.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit operating at the federal level. Comparable in mission (rare disease patient empowerment and research advancement) but broader in scope and policy-focused rather than condition-specific.
• American Autonomic Society: Professional society of clinicians and researchers focused on autonomic disorders. Adjacent rather than directly competitive, but overlaps on physician education and research dissemination that DINET also curates.

Direct peers

• Dysautonomia International: The largest U.S. dysautonomia patient advocacy nonprofit and a direct competitor for fundraising, medical advisory talent, and physician mindshare. DINET already collaborates with Dysautonomia International on the Big POTS Survey but competes for donor dollars and brand recognition.
• Standing Up to POTS: POTS-specific patient advocacy nonprofit providing similar educational resources, community support, and physician outreach. Competes with DINET for the same POTS-focused patient and caregiver audience.
• Dysautonomia Advocacy Foundation: Smaller dysautonomia-focused patient advocacy organization providing comparable community resources and physician education. Competes with DINET for donor attention within the dysautonomia community.

Regional players

• POTS UK: U.K.-based POTS patient advocacy and support charity with a similar model (information resources, forums, medical advisory board). Comparable in approach but serves a distinct geographic audience.

Others

• The Mighty: Story-based health community and existing DINET GTM partner. Comparable in mission of patient story amplification and chronic illness peer support, though operates at much larger scale across all conditions.
• Mayo Clinic Autonomic Reflex Laboratory: Major academic medical center conducting multiple dysautonomia clinical trials that DINET promotes. Comparable as a research and care provider but not a direct advocacy competitor; functions as a clinical content partner for DINET's resources.
• Vanderbilt Autonomic Dysfunction Center: Academic medical research center that conducts dysautonomia studies promoted by DINET. Comparable in subject matter expertise and serves as both a content source for DINET and a treatment destination for its community members.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCUZMfU6I2622J6Fv50oFaiQ
• Xx.com/DINETorg
• Facebookfacebook.com/DysautonomiaInformationNetwork
• LinkedInlinkedin.com/company/dysautonomia-information-network

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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