About The Ehlers-Danlos Society

Our Mission

The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

Our Vision

To create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.

Our People

Our Programs

Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The Ehlers-Danlos Society is working towards a time when geography and wealth no longer determine your quality of life. 

At The Ehlers-Danlos Society, we CARE – We are driving forward Care, Access, Research, and Education, and are committed to changing the lives of people impacted by EDS and HSD. 

Care — Providing Life-Changing Support Services  

Helpline and Virtual Support Groups

At The Ehlers-Danlos Society, we provide support, guidance, and resources to anyone affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)—wherever they are in the world. Our dedicated global helpline team supports individuals, families, and caregivers through phone and email. Healthcare professionals also reach out to our team for advice and patient resources, now making up over 10–15% of all inquiries.

In 2024, demand for our helpline services grew significantly, with calls increasing by 53% and emails by 11% year over year. Our team responded to thousands of requests, offering potentially life-changing information and support to those navigating these complex conditions.

We also host a wide range of virtual Let’s Chat support groups, providing welcoming, inclusive spaces where people can connect, share experiences, and find community. These groups include sessions for:

  • People living with any type of EDS or HSD

  • People living with vascular EDS (vEDS), and parents of children with vEDS

  • Parents with EDS or HSD, and parents of children with either diagnosis

  • Partners and spouses

  • Teens aged 13–17

  • Men

  • LGBTQIA+ individuals

  • Adults aged 50+

Our vibrant online community continues to grow, with more than 330,000 followers across social media platforms and over 140,000 members in our dedicated Inspire health forum group—one of the largest online spaces for individuals with EDS and HSD.

As global awareness increases, so does the need for support. Our goal is to equip individuals and families with the tools they need to advocate for themselves, have productive medical appointments, and improve their care and quality of life.

Looking for support or ways to connect?

You are not alone—we are here for you.

Access — Promoting Equity and Inclusion, Ensuring Geography and Wealth Don’t Determine Quality of Life

The CORE Network of Excellence: Advancing Access to Care Through Collaboration, Research, and Education

The Ehlers-Danlos Society is committed to reducing barriers to care and shortening the diagnostic journey for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). In response to the global need for accessible, multidisciplinary care, we created the CORE Network of Excellence—a program rooted in Collaboration, Outreach, Research, and Education.

The CORE Network is a growing international community of healthcare professionals dedicated to improving clinical outcomes through peer-to-peer learning, global collaboration, and research. Together, members work to:

  • Deepen clinical understanding of EDS and HSD diagnosis and management

  • Identify opportunities for systemic improvement

  • Accelerate access to care through collaborative innovation

  • Advocate for change through data-driven insights

Each CORE center meets rigorous standards focused on multidisciplinary expertise, clinical leadership, patient-centered care, and ongoing engagement with the community.

With 38 CORE centers across 11 countries, the program continues to expand access to quality care and build a connected global network that supports patients and clinicians alike.

Learn more about the CORE Network

Healthcare Professionals Directory

Finding healthcare professionals who understand EDS and HSD can be life-changing. Our Healthcare Professionals Directory helps individuals and families find clinicians who are familiar with diagnosing or managing Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

The directory includes physicians, physical therapists, genetic counselors, psychologists, and other specialists from around the world. It is searchable by name, specialty, country, and region, helping people access care locally or virtually where available.

Clinicians can request to be added by submitting a short form that is reviewed by our team. Many are also recommended by community members who have found their care helpful.

Explore the Healthcare Professionals Directory

The EDS and HSD Global Alliance

The EDS and HSD Global Alliance brings together patient organizations, charities, and nonprofit groups from across the world, all committed to advancing care, education, support, and research for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

Together, we are building strong collaborations that share resources and tools, increase awareness, and ensure that knowledge and education are available in multiple languages and formats—wherever they are needed.

Alliance members are listed in our Support Group and Charity Directory, helping individuals and families connect with trusted local support in their country or region.

We are grateful to all the organizations that are working in partnership with us to build a more informed, supportive, and empowered global community.

Connecting Through the Ehlers-Danlos Society App

The Ehlers-Danlos Society app is a secure, web-based and mobile platform connecting individuals, families, and clinicians worldwide. With more than 7,000 downloads, the app empowers users to:

  • Track symptoms and medications

  • Prepare summaries for appointments

  • Access trusted, up-to-date resources

  • Share tools with their care team

  • Connect with the global community (coming soon)

The app is free to download on iOS and Android.

Download The Ehlers-Danlos Society App

Language Access for All

To improve accessibility across all regions, we’ve launched key multilingual services:

  • Website translation: Core website content is now available in 22 languages, helping users access accurate information in their native language. You can select your language from the menu navigation bar.

  • Wordly event translation: Debuted at the 2025 Global Learning Conference, Wordly provides real-time translation into more than 60 languages, supporting full engagement in our live events—virtually and in person. View upcoming events here.

These tools reflect our deep commitment to equity, ensuring no one is excluded due to language.

Research — Fostering Collaboration and Advancing Understanding of All Types of EDS and HSD Through Research

A Global Commitment to Discovery

Since 2016, The Ehlers-Danlos Society has raised over $14 million to fund research into the types of Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated conditions.

Our goal is to ensure a consistent pipeline of groundbreaking research, with a focus on earlier diagnosis, more effective treatment, and better outcomes for people worldwide. Through our Research Grant Program, we aim to fund at least $1 million in research annually—supporting basic science, translational research, and clinical studies across a range of disciplines.

We continue to seek answers to some of the most critical questions, including:

  • What causes each type of EDS and HSD?

  • How do these conditions progress and respond to treatment?

  • What is the relationship between EDS, HSD, and conditions like POTS and mast cell activation syndrome?

  • Can we identify biomarkers, genetic variants, or shared pathways that help improve diagnosis and management?

DICE: Data, Inclusion, Collaboration, Excellence

At the heart of our research infrastructure is the DICE Global Registry—a worldwide research platform designed to collect data on all types of EDS and HSD and the wide range of associated symptoms and comorbidities.

DICE allows individuals living with EDS and HSD to contribute their lived experience and medical history securely and anonymously, helping researchers identify trends, patterns, and new opportunities for clinical trials, treatment development, and precision medicine.

In 2024, we launched researcher access to the DICE Registry. Researchers with IRB (ethics board) approval can now:

  • Apply to study anonymized registry data

  • Identify specific cohorts for further research

  • Share IRB-approved surveys with registry participants to enhance data collection

The DICE Registry already supports major studies, including the HEDGE Study, the largest-ever whole genome sequencing effort to identify the genetic basis of hypermobile EDS. With over 1,000 participants from 86 countries, early findings from HEDGE were presented in 2024 at the American Society of Human Genetics, with publications underway.

Join or learn more about the DICE Registry

The Ehlers-Danlos Society Global Biobank (Launching Fall 2025)

Thanks to a transformative $2.5 million donation (as part of a $6.7 million gift from the Mike and Sofia Segal Foundation), we are establishing the first dedicated global biobank for EDS and HSD research.

The EDS and HSD Global Biobank will securely store biological samples—such as blood, skin, and urine—alongside anonymized clinical and lifestyle data. This resource will support future research into genetics, disease mechanisms, biomarkers, and potential treatment pathways.

The biobank will launch in phased collaboration with approved research institutions, and will not initially be open to direct public enrollment. Individuals interested in contributing are encouraged to join the DICE Registry, where they may be invited to participate in associated studies.

Beginning in 2025, external researchers with approved studies will be able to:

  • Apply for access to biospecimens and data

  • Partner with The Ehlers-Danlos Society on targeted investigations

  • Use the biobank to support clinical trials and biomarker discovery

Enabling Global Collaboration

Beyond funding and infrastructure, The Ehlers-Danlos Society facilitates access to research by:

  • Sharing IRB-approved surveys through our networks

  • Supporting community-participation in academic studies

  • Offering open-access funding to remove paywall barriers on published findings

  • Connecting research teams with community advisors and participants

Together, we are building a future where answers are within reach—driven by community partnership, clinical expertise, and a shared mission to improve lives.

Learn more about our research priorities and how to get involved

Education — Educating and Mentoring All Healthcare Professionals and Individuals Impacted By All Types of EDS and HSD

  • EDS ECHO – An Evolution in Medical Education and Care Delivery 

The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Early diagnosis is crucial to positive patient health.  

As these conditions are multi-systemic, the problems often go unconnected for many years. Many in our community report being told their symptoms “are all in their head” or that they cannot possibly be experiencing the pain or other symptoms they say they are. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments. Once diagnosed, there is often little or no follow-up care, and often at the point of diagnosis, patients are not given information on their condition, how to self-manage aspects of their care, adaptions that can be made to improve quality of life, or where to find support for a lifelong, chronic condition. 

Too many report that they are forced to travel far and wide to access a physician who knows how to manage their healthcare, often at great personal expense, and often with incredibly long wait times of over three years. In some countries, there is no recognition of EDS or HSD, or very little knowledge or understanding of how to manage symptoms.  

People have been turned away from Emergency Rooms or had treatment delayed due to misconceptions or lack of knowledge on the different types of EDS and HSD, and their associated conditions. This needs to change, and education is key.  

Project ECHO® addresses population health in a scalable way — moving knowledge instead of people via telementoring and collaborative care with the philosophy of we can ‘all teach, and all learn’. In 2019 The Ehlers-Danlos Society launched EDS ECHO, a revolutionary program that seeks to support health professionals around the world in caring for patients with Ehlers-Danlos syndromes and hypermobility spectrum disorders. The first-ever rare diseases ECHO, EDS ECHO seeks to tackle a key issue facing patients with EDS and HSD: lack of knowledgeable clinicians. EDS ECHO is helping us reach clinicians all over the world, arming them with the tools and knowledge to care for their own patients with EDS and HSD.  

EDS ECHO is a series of programs and courses for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD, and associated symptoms and conditions. Enhancing care for people with all types of EDS and HSD through case-based discussions, sharing knowledge, and expert updates is at the heart of what we do. We also help local and regional groups to start a program for the care of their patients, expanding the EDS ECHO network, and bringing care closer to home. Programs are run from hubs in the USA, Canada, Mexico, United Kingdom, Australia, and New Zealand, 

EDS ECHO also runs programs on advocacy and for community leaders and educators, exploring ways participants can better teach and support those living with EDS or HSD. The Ehlers-Danlos Society is the first organization to have launched an ECHO program for a patient community. 

Since its inception, EDS ECHO has added several new programs to its portfolio: 

  • Advocacy 
  • Allied Health Professionals  
  • Clinicians 
  • Clínico en Español
  • Community Leaders and Educators
  • Finding Functional Foundations
  • Fundamentals of the Integral Movement Method (IMM) 
  • Genetics and Genomics 
  • Healthcare Student Program
  • Multidisciplinary Team Practice
  • Nutrition
  • Pediatrics 
  • Vascular Ehlers-Danlos syndrome (vEDS) 

Already, 2,100 participants have joined EDS ECHO. Recognized with a “Project ECHO Excellence Award” in 2023, EDS ECHO’s impact is evident in the positive feedback from participants who report enhanced knowledge, confidence, empathy and networking opportunities. These achievements translate into real-world benefits, including improved patient care and increased readiness to tackle rare disease challenges.

  • EDS ECHO Summits and Global Learning Conferences 

We are proudly working to provide learning conferences each year for individuals, families, and caregivers affected by EDS and HSD, and the health providers that care for them.  

The EDS ECHO Summits are twice-yearly, virtual events, that share the latest research and knowledge with community members and health professionals globally, through the traditional Project ECHO® all-teach, all-learn format, and are CME-accredited.  

Our Global Learning Conference [GLC] is an annual hybrid event to bring together the community, providing opportunities to interact, find support, and learn management strategies and information from world-leading experts in EDS and HSD. We welcome community members, families, carers, and junior zebras aged 6-18 to join us in person, and offer a comprehensive virtual attendance option for people worldwide to attend from anywhere they have wifi. The GLC is CME-accredited.   

The Ehlers-Danlos Society International Scientific Symposiums are triennial meetings to welcome clinicians, and basic and clinical researchers from around the world to examine the latest research, diagnostic criteria, pathways, and guidelines for management and care. The scientific meetings are for health professionals, are hybrid, and are CME-accredited.  

Nancy Rogoski is shown to the left. A timeline is shown. From 1985 - 2016 the timeline details Ehlers-Danlos National Foundation. From 2916 to the present day, the timeline details The Ehlers-Danlos Society.

The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos research, patient support, and public advocacy, have been felt around the world.

From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of Ehlers-Danlos in its many forms—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support and advocacy for patients, caregivers, and medical professionals.

FR Fundraising Badge Portrait LR

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