Dysautonomia International

What Dysautonomia International does

Dysautonomia International is a US-based 501(c)(3) non-profit organization founded in 2012 and headquartered in East Moriches, New York, dedicated to improving the lives of individuals living with autonomic nervous system disorders — particularly Postural Orthostatic Tachycardia Syndrome (POTS) — through research funding, physician education, public awareness, and patient empowerment programs. The organization operates an extensive programmatic portfolio including three competitive peer-reviewed research grant funds (POTS Research Fund, Dysautonomia Research Fund, and Long COVID Research Fund), an annual DysConf conference, the Dysautonomia Dispatch blog, state and international support groups, a Find A Doctor directory, an Awareness Army volunteer program, and as of December 2025, an Autonomic Disorders Fellowship program at the University of Toledo Medical Center. The organization is governed by a volunteer Board of Directors and supported by Medical and Patient Advisory Boards composed of leading autonomic specialists from institutions such as Mayo Clinic, University of Calgary, and University of Toledo.

The organization's business model is donation-based and volunteer-driven, with only two paid staff as of 2018 (Director of Events & Medical Affairs and Office Manager) and the bulk of operations executed by volunteer board members, advisory board members, and support group leaders. Revenue is generated through individual donations, planned giving, employer matching gifts, merchandise sales (Amazon Store, CafePress, FighterWear), and 10% sales-donation corporate partnerships with SaltStick/Vitassium and NormaLyte. Most services — educational materials, support groups, webinars, conferences, and the Find A Doctor directory — are provided free to patients and families. The organization does not develop proprietary technology products, maintain an API, or offer any app; its competitive differentiation rests on its regulatory advocacy wins (ICD-10 code G90.A effective October 1, 2022; ICD-11 code from WHO; FY 2018 NIH congressional direction), its community ecosystem, and its medical advisory talent, operating in a market where autonomic disorders impact over 70 million people globally, fewer than 75 physicians are board-certified in autonomic disorders, and only five medical schools offer autonomic fellowship programs.

Name

Dysautonomia International

Legal name

Dysautonomia International

Website

https://dysautonomiainternational.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

11–50 employees

Short description

Dysautonomia International is a US-based 501(c)(3) non-profit founded in 2012 that funds research, physician education, advocacy, and patient support programs for individuals affected by autonomic nervous system disorders, particularly POTS, serving a patient population of 1-3 million Americans.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Grantmaking and Giving Services (81321)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Autonomic Disorders (Dysautonomia) (HLAKAIAN)

akta.pro secondary industry

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

Keywords

• Autonomic disorder research
• Patient advocacy services
• Medical education programs
• Disease awareness campaigns
• Community support groups

Headquarters

HQ city

East Moriches

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: Primary revenue stream through individual donations, planned giving, employer matching gifts, and direct fundraising campaigns such as Cupcakes for a Cure, Dress Down Day, and host-a-fundraiser programs.
2. Merchandise Sales: Revenue from Amazon Store, CafePress store (dysautonomia awareness gear, 'I'm so tachy' shirts), and FighterWear products. Some vendors donate portions of sales back to the organization.
3. Corporate Partnerships: Sponsorships from platinum and gold sponsors. Product partnerships where companies like SaltStick/Vitassium and NormaLyte donate 10% of sales to the organization.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

Dysautonomia International is a 501(c)(3) nonprofit that provides research funding, physician education, public awareness, and patient empowerment programs for individuals affected by autonomic nervous system disorders such as POTS, neurocardiogenic syncope, and pure autonomic failure. Its core offerings include the DysConf annual conference, the Autonomic Disorders Fellowship training program, peer-reviewed research grant funds (POTS, general dysautonomia, Long COVID), state and international support groups, a Find A Doctor directory, educational video content, and a Speakers Bureau.

Product overview

Dysautonomia International is a non-profit organization offering a portfolio of educational, research, and community programs rather than a traditional software product. The core offerings include the DysConf annual conference, The Dysautonomia Dispatch blog, and Autonomic Disorders Fellowship for physician training. Research initiatives are supported through the POTS Research Fund, Dysautonomia Research Fund, and Long COVID Research Fund grant programs. Patient support is provided through state-based support groups, a Find A Doctor directory, and educational video content on Vimeo and YouTube. The organization runs annual awareness campaigns including Dysautonomia Awareness Month in October and Dysautonomia Lobby Day for advocacy efforts. Awareness merchandise is available through an Amazon Store. The organization does not offer a technology product with AI capabilities, API integrations, or certifications.

Differentiator

Problem solved

Functional benefit

Products and services

• DysConf (Dysautonomia International Annual Conference) Annual conference providing education, awareness, and community connection for patients, researchers, and physicians in the dysautonomia field; offers in-person and virtual attendance options and features expert physicians and researchers.
• Autonomic Disorders Fellowship Program A one-year advanced clinical training program designed to prepare physicians to become expert leaders in autonomic nervous system disorders; inaugural fellowship hosted at the University of Toledo Medical Center under Dr. Blair Grubb with funding to support one fellow per year for three years.
• POTS Research Fund Competitive peer-reviewed grant program funding POTS (Postural Orthostatic Tachycardia Syndrome) research, managed with oversight from the Medical Advisory Board.
• Dysautonomia Research Fund Grant program funding broader dysautonomia research beyond POTS, supporting scientific advancement in autonomic nervous system disorders.
• Long COVID Research Fund Dedicated funding stream supporting research into Long COVID and its relationship to dysautonomia.

Named customers1 record

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

Nine partnerships are on record, tiered flagship, core and minor.

• University of Toledo Medical CenterflagshipStrategic or Co-development Partner · 1 December 2025Host site for the inaugural Dysautonomia International Autonomic Disorders Fellowship, a one-year advanced clinical training program designed to prepare physicians to become expert leaders in autonomic nervous system disorders. The fellowship is supervised by Dr. Blair Grubb, Distinguished University Professor of Medicine and Pediatrics and Director of the Syncope and Autonomic Disorders Clinic.
• Dr. Blair GrubbflagshipStrategic or Co-development PartnerInternationally renowned dysautonomia specialist serving as supervisor for the Autonomic Disorders Fellowship at University of Toledo. Dr. Grubb is a Distinguished University Professor of Medicine and Pediatrics and Director of the Syncope and Autonomic Disorders Clinic.
• Mayo Clinic (Dr. Brent Goodman)coreStrategic or Co-development PartnerDr. Brent Goodman, Director of the Autonomic Lab at Mayo Clinic's Scottsdale, Arizona campus, serves on the Medical Advisory Board. He serves as outreach ambassador to professional societies, medical schools, and medical journals, and helps review medical content and select research to fund.
• NIH (National Institutes of Health)flagshipStrategic or Co-development PartnerDysautonomia International advocated for and helped organize the first NIH POTS Research Workshop in 2019. The organization continues to work with NIH to stimulate POTS research and develop strategies for better understanding and treatment. Congress directed NIH to prioritize POTS research based on the organization's advocacy.
• NormaLytecoreGTM or Marketing PartnerNormaLyte generously donates 10% of sales from PURE (an electrolyte powder developed with input from Dysautonomia International and over 1000 dysautonomia patients) to support the organization's research, physician education, public awareness, and patient empowerment programs.
• SaltStick/VitassiumcoreGTM or Marketing PartnerSaltStick Vitassium is an oral salt pill that donates 10% of all sales to Dysautonomia International. The product was designed for dysautonomia patients who need to increase salt intake.
• FighterWearminorGTM or Marketing PartnerAwareness gear designed by fellow dysautonomia warrior Morgan McCastor, who donates the profits to Dysautonomia International.
• Medical Advisory BoardflagshipStrategic or Co-development PartnerBoard includes leading autonomic disorder specialists including Dr. Jeffrey Boris, Dr. Satish Raj (University of Calgary), Dr. Steven Vernino, Dr. Brent Goodman (Mayo Clinic), Dr. Blair Grubb (University of Toledo), and Dr. Brent Goodman. Members serve as outreach ambassadors to professional societies, medical schools, and medical journals, and help review medical content.
• Sjogren's AdvocatecoreStrategic or Co-development PartnerPartnership with Dr. Sarah Schafer's Sjogren's Advocate website to provide educational resources about the connection between Sjogren's disease and dysautonomia. Dr. Schafer is a medical doctor with POTS and Sjogren's who founded the resource to help patients advocate for themselves.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• POTS UK: UK-based nonprofit dedicated to Postural Orthostatic Tachycardia Syndrome (POTS) support, research, and awareness. Directly comparable mission, patient community, and disease focus to Dysautonomia International, though operating primarily in the UK.
• StandingUpToPOTS: US-based 501(c)(3) nonprofit focused on POTS awareness, education, and patient support. Closely aligned mission and disease focus, with comparable fundraising and awareness program models.
• Dysautonomia Support Network: Nonprofit organization providing support, education, and advocacy for individuals affected by dysautonomia. Shares the same patient community and disease-specific mission as Dysautonomia International.
• The Dysautonomia Project: Nonprofit focused on dysautonomia education and awareness, including the 'Beating Dysautonomia Together' book and patient resources. Directly comparable mission around autonomic disorder education.
• Dysautonomia Youth Council of America: Youth-focused nonprofit advocating for young people affected by dysautonomia. Shares the same disease focus and patient community as Dysautonomia International, with overlapping educational and awareness programming.

Broad incumbents

• National Organization for Rare Disorders (NORD): Larger US-based nonprofit advocacy organization for rare diseases, which includes dysautonomia in its portfolio. Provides similar advocacy and research funding infrastructure but at a much broader scale and with institutional resources.
• American Heart Association: Large US-based nonprofit covering cardiovascular conditions, including POTS which involves orthostatic and cardiac symptoms. Operates overlapping research funding, physician education, and policy advocacy functions at vastly greater scale.

Emerging players

• Solve M.E. Nonprofit focused on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID, both of which overlap significantly with dysautonomia. Comparable research funding and patient advocacy model for chronic illness populations.
• Long COVID Alliance: Coalition of patient-advocates, scientists, and disease organizations focused on Long COVID, which has substantial overlap with dysautonomia/POTS. Comparable as an emerging advocacy ecosystem competing for similar patient populations and research funding.

Others

• Mayo Clinic Autonomic Reflex Laboratory: Leading clinical and research institution for autonomic disorders, with key Dysautonomia International Medical Advisory Board members (Dr. Brent Goodman) on staff. Comparable as a clinical research entity but operates as a healthcare provider rather than a nonprofit advocacy organization.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/Dysautonomia
• YouTubeyoutube.com/@DysautonomiaInternational
• Facebookfacebook.com/dysautonomiainternational
• LinkedInlinkedin.com/company/dysautonomia-international
• Instagraminstagram.com/dysautonomiaintl

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

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 Dysautonomia International