The Ehlers-Danlos Society

What The Ehlers-Danlos Society does

The Ehlers-Danlos Society is a 501(c)(3) nonprofit organization founded in 1985 as the Ehlers-Danlos National Foundation and re-established in May 2016 as the first truly international organization devoted exclusively to Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Headquartered in New York City with a registered UK charity entity in London, the organization operates as a global convener for the EDS and HSD patient community, caregivers, healthcare professionals, and researchers. Its core programs include EDS ECHO, a Project ECHO-based telementoring network that has trained more than 2,500 healthcare professionals across 58 countries; the DICE Global Registry, an international patient data registry; a Biobank for tissue samples; and the CORE Network of Excellence, which unites 44 specialized care centers across 13 countries to standardize EDS and HSD care delivery. The Society also produces the annual Global Learning Conference, the Loose Connections eMagazine, and a mobile application supporting community access to resources.

The Society is funded through a diversified mix of individual donations, foundation grants, planned/legacy giving, corporate sponsorships, and event-related revenue, with no commercial product sales. Notable funding includes a $6.7 million pledged grant from the Mike and Sofia Segal Family Foundation in December 2023 to underwrite research and treatment initiatives, contributing to a cumulative $40 million+ in research funding deployed since the organization's founding. It maintains a Global Alliance network of more than 100 partner organizations across 21 countries for awareness and advocacy, and it participates in multiple international rare disease policy coalitions including NORD, EURORDIS, Rare Diseases International, the WHO Civil Society Commission, and Global Genes. The organization holds Charity Navigator 4-star and GuideStar Platinum transparency ratings, and in 2026 received the EURORDIS Members Award.

Governance is provided by a Board of Directors chaired by Melanie Macleod, with Lara Bloom serving as President and CEO. The executive team includes a Chief Scientific Officer (Dr. Maggie Linn Bartlett), Chief Medical Officer (Dr. Dacre Knight), Chief Operations Officer (Sinead Waugh), Chief Financial Officer (Eric Alley), and a consultant Chief Marketing Officer (Erin Simons). Staff of approximately 30+ spans research, learning and education, events, partnerships, communications, and digital platform operations.

Name

The Ehlers-Danlos Society

Legal name

The Ehlers-Danlos Society

Website

https://ehlers-danlos.com

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

11–50 employees

Short description

The Ehlers-Danlos Society is a global nonprofit that advances research, education, and care for people with Ehlers-Danlos syndromes and hypermobility spectrum disorders, serving patients, healthcare professionals, caregivers, and researchers across more than 50 countries through ECHO training, registries, and partner networks.

Ownership category

akta.pro rank

Product category

Rare Disease Advocacy and Nonprofit Healthcare Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

Services-Membership Organizations (8600), Services-Health Services (8000)

akta.pro primary industry

HIE Platforms & Network Services (Community/Regional/National) (HLACABAB)

akta.pro secondary industries

Health Data, Vital Statistics & Population Health Informatics (BPAIAJAM), Health Information Management (EHR) & Medical Office Administration (EDAOAJAF)

Keywords

• Rare disease advocacy
• Patient support services
• Medical education programs
• Healthcare professional training
• Research funding initiatives

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: Tax-deductible donations from individuals, foundations, and organizations. Registered 501c3 in USA (EIN# 38-2813140) and registered charity in UK (Number 1180984). Received $6.7 million pledge from Mike and Sofia Segal Family Foundation in December 2023.
2. Research Funding and Grants: Funded more than $40 million in research since founding. Receives grants for specific research initiatives including HEDGE study, biobank, and registry.
3. Events Revenue: Revenue from international symposiums, Global Learning Conference (hybrid event in Dallas, Texas July 2026), and educational programs.
4. EDS ECHO Programs: Educational programs for healthcare professionals with some courses and programs available.

Pricing tiers

Go-to-market motion2 records

Distribution channels7 records

Marketing channels10 records

Core offering

The Ehlers-Danlos Society is a global nonprofit organization that advances research, education, and patient support for people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It funds and conducts research, runs the EDS ECHO telementoring program that has trained over 2,500 healthcare professionals across 58 countries, operates the DICE Global Registry and Biobank, coordinates the CORE Network of Excellence spanning 44 care centers in 13 countries, and produces community-facing resources including a mobile app, conferences, and the Loose Connections eMagazine.

Product overview

The Ehlers-Danlos Society operates a unified portfolio of programs and platforms focused on education, research, and community support for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The core offerings include EDS ECHO, a global telementoring education network for healthcare professionals; the DICE Global Registry and Biobank for research data and tissue sample collection; the CORE Network of Excellence uniting 44 care centers globally; a mobile application for community resources; the Loose Connections eMagazine for content; Listening Labs for patient-centered Model of Care development; and annual Global Learning Conferences. The society functions as a non-profit organization rather than a commercial product company.

Differentiator

Problem solved

Functional benefit

Brands

• EDS ECHO: An award-winning global education network for healthcare professionals, using Project ECHO methodology to improve care for people with Ehlers-Danlos Syndromes and hypermobility spectrum disorders. Has trained more than 2,500 healthcare professionals across 58 countries.
• CORE Network of Excellence
• Global Alliance

Products and services

• EDS ECHO Program A global award-winning telementoring and collaborative care education network that uses Project ECHO methodology to train healthcare professionals across disciplines on caring for patients with EDS and HSD. Has trained more than 2,500 healthcare professionals across 58 countries. Hubs at Indiana University Health and Royal Society of Medicine.
• DICE Global Registry International patient registry that collects data from individuals with EDS and HSD to advance research understanding of these conditions.
• EDS and HSD Biobank A research biobank that collects and stores tissue samples from individuals with EDS and HSD to support research, maintained in partnership with SAMPLED as the repository.
• CORE Network of Excellence A global network uniting 44 centers and networks across 13 countries dedicated to improving care models, workforce development, research participation, and implementation of diagnostic and care standards for EDS and HSD.
• Global Learning Conference Annual hybrid international conference bringing together individuals, families, healthcare professionals, and caregivers impacted by EDS and HSD for education, networking, and community building. The 2026 event is planned in Dallas, Texas in July.
• Listening Labs Model of Care Program Structured virtual sessions inviting community members to share lived experiences to help develop a new Model of Care for EDS and HSD.
• The Ehlers-Danlos Society Mobile App Mobile application providing 24/7 access to resources, information, news, and support tools for individuals with EDS and HSD, their families, and healthcare professionals.

Quantifiable outcome

• Over $40 million in research funding deployed since 2016
• +3 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles5 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Indiana University Health (ECHO Hub)coreStrategic or Co-development PartnerOne of the original two EDS ECHO program hubs established in April 2019, located at Indiana University Health in Indianapolis, IN, USA. Provides expert specialist teams for the hub-and-spoke knowledge-sharing network.
• Royal Society of Medicine (ECHO Hub)coreStrategic or Co-development PartnerOne of the original two EDS ECHO program hubs established in April 2019, located at The Royal Society of Medicine in London, UK. Provides expert specialist teams for the hub-and-spoke knowledge-sharing network.
• CORE Network of Excellence (44 centers)coreStrategic or Co-development PartnerUniting 44 centers and networks across 13 countries to improve care models and collaboration. CORE members represent expertise across many areas of care delivery and contribute to workforce development, research participation, and implementation of diagnostic and care standards.
• Global Alliance (100+ organizations)coreStrategic or Co-development PartnerNetwork of more than 100 organizations across 21 countries raising awareness and advocacy for EDS and HSD. Builds collaborative networks and extends reach of educational resources globally.
• International Consortium on EDS & HSDcoreStrategic or Co-development PartnerInternational consortium bringing together leading experts worldwide to advance research, diagnosis, and treatment for Ehlers-Danlos syndromes and related disorders. Oversees diagnostic criteria, clinical guidance, and research priorities.
• Project ECHOcoreTechnology or IntegrationPartnership with Project ECHO (Extension for Community Healthcare Outcomes) at University of New Mexico Health Sciences Center. Uses proven ECHO model for movement of knowledge via telementoring and collaborative care.
• Inspire Online CommunityminorGTM or Marketing PartnerPartnership with Inspire.com for online support group and discussion community for EDS and HSD patients.
• Candid (GuideStar)minorGTM or Marketing PartnerPlatinum Seal of Transparency partner demonstrating nonprofit accountability and transparency standards.
• Charity NavigatorminorGTM or Marketing Partner4-Star Charity Navigator rating partner demonstrating financial accountability and transparency.
• EURORDIScoreStrategic or Co-development PartnerEuropean Organisation for Rare Diseases membership and recipient of 2026 EURORDIS Members Award recognizing outstanding work in rare disease advocacy, research, and education.
• WHO Civil Society CommissionminorStrategic or Co-development PartnerMember of WHO Civil Society Commission, engaging in global health policy discussions.
• SAMPLED (Biobank Repository)coreTechnology or IntegrationPartnership with SAMPLED as the biobank repository for the Society's biobank program, maintaining tissue samples for research.

Scale indicators10 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Global Genes: U.S.-based rare disease advocacy organization focused on empowering patients, accelerating research, and building care networks. Directly comparable as a peer rare disease nonprofit operating across multiple disease areas with similar programs (research grants, HCP education, awareness campaigns).
• Genetic Alliance UK: U.K.-based alliance of rare condition and genetic disorder patient organizations of which the Society is a member. Closely comparable in mission: building networks of rare disease patient organizations, advocacy, and information dissemination for patients and families.
• NORD (National Organization for Rare Disorders) Medical & Patient Registries: Operates disease-specific patient registries comparable in mechanism to the DICE Global Registry and Biobank. Closely comparable in data infrastructure strategy for rare disease research enablement.

Broad incumbents

• Muscular Dystrophy Association (MDA): Large, well-funded nonprofit supporting research, care (specialty clinics), and HCP education for neuromuscular diseases. Comparable operating model: research funding, clinical care centers, summer camps/community programs, fundraising events. Demonstrates the scale a single-disease advocacy org can reach.
• Cystic Fibrosis Foundation: Premier single-disease rare disease foundation with a care center network, research funding program, and accredited clinical trials network. Strongly comparable in mission structure; considered a gold standard for what a successful single-disease rare disease charity can achieve in funding research and drug development.
• National Organization for Rare Disorders (NORD): Larger, well-established U.S. rare disease umbrella advocacy organization operating across 7,000+ rare diseases. Directly comparable mission: research funding, HCP education, patient support, and policy advocacy for rare disease communities. Both serve as membership/advocacy hubs in the rare disease space.
• Lupus Foundation of America: Single-disease advocacy organization running research grants, HCP training, and patient support programs for lupus. Comparable funding model (donor-driven), research infrastructure, and HCP education programs at scale analogous to the Society's mission.
• EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient organizations, of which The Ehlers-Danlos Society is a member. Overlapping mission in European policy advocacy and pan-European rare disease community building. Comparable on advocacy, alliance building, and HCP capacity development.

Regional players

• Arthritis Foundation: U.S.-focused advocacy organization for arthritis patients including hypermobility-adjacent conditions. Operates research grants, community programs, and HCP resources similar to EDS Society models. Relevant peer given HSD/hEDS overlap with joint hypermobility patient populations.

Others

• Project ECHO (University of New Mexico): Foundational telementoring platform on which the Society's EDS ECHO program is built. Comparable as the underlying technology/methodology framework for HCP education — useful peer for understanding the ECHO model's broader ecosystem and partnership implications.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/TheEDSociety
• YouTubeyoutube.com/channel/UC652wu-mvi2ghwQN-is7LIQ
• Facebookfacebook.com/ehlers.danlos
• Instagraminstagram.com/ehlers.danlos

Compliance7 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about The Ehlers-Danlos Society