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. 

Providing Life-Changing Support Services  

We offer support, guidance, and advice to all who need it. Our dedicated helpline team supports individuals, families, and carers worldwide through a telephone helpline and email support. Medical professionals also use the helpline to seek advice and resources for their patients, accounting for 10-15% of calls.   

We strive to give hope to all those whose lives are affected by EDS and HSD. We host several virtual Let’s Chat support groups for:  

  • People living with a type of EDS or HSD 
  • People living with vascular Ehlers-Danlos syndrome (vEDS) 
  • Parents who have vEDS or who have children with vEDS 
  • Partners and Spouses 
  • Teens aged 13-17 
  • Parents who have EDS or HSD or who have children with EDS or HSD 
  • Men 
  • LGBTQIA+ individuals 
  • BIPOC individuals 

We have vibrant online communities on social media with over 200,000 members and a closed group on Inspire’s health forum with over 130,000 members.  

With each year, our helpline services face increased demand. As global awareness grows, so do our communities and the need for support, information, and advice. We want to arm individuals and families with all they need to have effective medical appointments and consultations to improve their quality of life and care.  

Reaching Out to Our Youth Community 

The Ehlers-Danlos syndromes and hypermobility spectrum disorders are genetic disorders, and individuals can be symptomatic from birth. With earlier diagnosis and intervention, and with support networks and a Zebra Strong community, our younger Zebras can thrive! Many spend years coping alone with symptoms, missing out on social occasions, schooling, or hobbies, and not being able to express the grief and frustration they feel. For children, teens, and young adults affected by rarer types of EDS, there may also be life-limiting complications. 

The Ehlers-Danlos Society wants to ensure our community’s junior zebras, teens, and young adults feel supported and have the resources, tools, and opportunities they deserve. In 2023, we will develop a dedicated youth program to facilitate and deliver support services for children and adolescents with EDS and HSD. The foundations for the program have begun with free places at our Junior Zebra tracks at our Global Learning Conferences and with teens’ virtual support groups

With your support, we can provide life-changing resources to support children and youth worldwide in multiple languages and engaging and inclusive mediums. 

We are also excited to be hosting family camps in 2024 for families living with hEDS/HSD and those with rarer types of EDS. In 2023, due to the generosity of our donors, we welcomed children and families with vascular Ehlers-Danlos syndrome (vEDS) for a vEDS Family Camp. 

Global Centers and Networks of Excellence Vision: Multi-Disciplinary Team Care Around the World 

The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD. 

Toward that end, we have developed a growing program of Centers and Networks of Excellence (CNEs) for EDS and HSD around the globe. This is a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide and alleviate their pain and symptoms. 

We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care. We look forward to making this a reality. Our aim is that no matter where you live, you have access to a multidisciplinary team approach. 

We want the goal to be long-term care for both the physical and the psychological aspects of living with these conditions. Both are essential to ensure that people living with EDS and HSD are offered the best chance at a good quality of life that everyone so richly deserves. We know that it is more than diagnosis and tests, it’s the language used, it’s the tone. It’s about someone feeling believed and validated. Each Center or Network will commit to providing exceptional care to the community through listening, validating, and offering care and management options. 

There are currently 23 CNEs in 8 countries. Learn more here. Community members can also search the Health Professionals Directory to find a doctor or a therapist.

Global Affiliate Program 

The Ehlers-Danlos Society strives to increase awareness, improve care, and grow community support for people living with EDS and HSD worldwide. Local support groups and charities are working hard to help those with EDS and HSD in their communities worldwide. 

Through The Ehlers-Danlos Society’s Global Affiliate Program, we work collaboratively to improve the lives of individuals around the world. By uniting, we aim to provide resources and information where they are needed. Our directory enables people living with EDS or HSD to find support services and groups that are local to them, and our aim is to provide translated resources to enable them to find care and management locally. The Global Affiliate Program has 80 members in 19 countries dedicated to supporting people affected by these conditions. Together we dazzle! 

Connecting With Community 

 Connection is everything when living with a chronic or rare disease. Some people have never met or spoken to another person living with the same type of EDS or HSD. Some of the rarer types of EDS affect a small number of families around the world. A lack of research and evidenced-based insights means families often wish to connect with others to understand how their conditions have affected them, and how they are coping, and living with quality of life.  

 A frequently requested service on our helpline is to connect people with others who may be going through similar experiences, whether they be parents, partners, or individuals embarking on a specific treatment or surgery for example. Currently, social media does not provide a safe space to connect with individuals. A smartphone and web-based app will allow The Ehlers-Danlos Society to connect individuals all around the world, within a secure, safe space, and facilitate communication and connection.  

We are working to include exciting features within the app that will support both the community of individuals and families affected by EDS and HSD and also provide vital pathways for health professionals. The app will help enable health professionals, of all disciplines, to assist in the diagnosis and support of their patients all around the world. 

These include: 

  • Diagnostic questionnaire 
  • Medication tracking
  • Symptom diary
  • Helpful resources 

The app will be available on both the Apple App Store and Google Play Store.  

 

Collaborative International Research and Global Registry 

Since 2016, The Ehlers-Danlos Society has funded $10 Million in research into the types of EDS, HSD, and associated conditions. Our goal is to ensure consistent and groundbreaking research into these conditions to help individuals living with these conditions, worldwide. We aim to fund $1 million annually in research through our research grants program. By funding researchers, we can support them to reveal vital clues to beat EDS and HSD and improve quality of life for all.  

We need to understand the best ways to treat symptoms, how the conditions develop and progress over time, the genetic causes behind hypermobile EDS and hypermobility spectrum disorders, the prevalence of all types of EDS and HSD, and the association between EDS, HSD, and conditions such as postural orthostatic tachycardia syndrome and mast cell activation syndrome.  

DICE – Data, Inclusion, Collaboration, Excellence 

The Ehlers-Danlos Society is bringing together medical professionals from all over the world to work on ground-breaking management and care. At the core of this research is the DICE Global EDS and HSD Registry. The registry facilitates medical research for all types of EDS, HSD, and associated symptoms and comorbidities. Among these projects is an ongoing study of whole genome sequences in individuals meeting the 2017 hypermobile Ehlers-Danlos syndrome (hEDS) criteria. More information about the HEDGE Study can be found here. If researchers can identify hEDS genetic variants, future studies can then examine patients with hypermobility spectrum disorders (HSD) to determine how often these variants appear in that population.  

The registry collects a wide range of data from people living with all types of EDS and HSD. Given the different ways in which the conditions can present, it will help us to raise awareness and support clinicians to recognize signs and symptoms more effectively. The registry will also provide new opportunities for research, including identifying links between EDS and HSD and other conditions. Without this understanding, people around the world will continue to be misdiagnosed or go undiagnosed. 

Facilitating Research 

There are many clinicians, basic scientists, and researchers around the world who are working to support people with EDS and HSD and improve quality of life. Researchers can apply to study the data in the DICE EDS and HSD Global Registry, and find suitable study participants. Researchers with IRB approval can also share their surveys through The Ehlers-Danlos Society to ensure rich datasets and to give the opportunity for people to take part in research.  

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. 

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: 

  • Clinicians 
  • Fundamentals of the Integral Movement Method (IMM) 
  • Advocacy 
  • Allied Health Professionals  
  • Pediatrics 
  • Genetics and Genomics 
  • Vascular Ehlers-Danlos syndrome (vEDS) 
  • Community Leaders and Educators

Already, 1880 participants have joined EDS ECHO.  

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.

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