About The Ehlers-Danlos Society

Our Mission

The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.

We are proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.

What We Do

Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. Our strength begins with hope.

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.

Education is needed to advance early diagnosis and intervention—and post-diagnosis, patients urgently need support and guidance. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Collaborative International Research

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 Global EDS and HSD Registry.

We need to understand the true prevalence of the Ehlers-Danlos syndromes and hypermobility spectrum disorders worldwide. We need as much data as possible to better understand the different sub-types and their varying, multi-systemic impact on patients. The global EDS and HSD registry collects a wide range of data from people living with all types of Ehlers-Danlos syndrome and those living with hypermobility spectrum disorders. Given the different ways in which the Ehlers-Danlos syndromes and hypermobility spectrum disorders can present, it will also 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, patients will continue to be mistakenly or undiagnosed.

Since 2016, The Ehlers-Danlos Society has awarded funding for research grants in to the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Our goal is to ensure consistent and groundbreaking research into these conditions to help individuals living with these conditions, worldwide.

Education Initiatives

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. EDS ECHO seeks to tackle a key issue facing patients with EDS and HSD: lack of knowledgeable clinicians. Too many in our community 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 two years. 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 covers all types of EDS, HSD, and associated symptoms and conditions, providing clinical case presentations, the latest management advice, and evidential research. We are also excited to have now launched: vEDS ECHO a program led by Dr. Sherene Shalhub that is dedicated to increasing awareness and education in all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS); Pediatric ECHO for pediatric clinicians, worldwide; Allied Health Professionals ECHO with three hubs in the UK, the US, and in Australia for all Allied Health Professionals; and, Nurses ECHO for nurses and physician assistants.

We are thrilled to have so many professionals and patients interested in expanding their knowledge and increasing awareness by joining EDS ECHO. Our mission is to have 1000 new experts by 2021, and to help us increase knowledge of EDS and HSD on a global scale. If you are a health professional, please click here to join our EDS ECHO program. If you have EDS, HSD, or are affected by these conditions, please tell your healthcare team about EDS ECHO and download the flyer, here.

The Ehlers-Danlos Society organizes medical and scientific symposiums to examine the latest research and update the diagnostic criteria and guidelines for management and care. We work with the Comorbidity Coalition and the International Consortium on developed clinical care pathways for management and diagnosis. Events for health professionals are held globally and are CME-accredited.

Annual Global Learning Conferences bring together and unite our community, providing opportunities to interact, find support, and learn management strategies and information from world-leading experts in EDS and HSD.

In October 2019, thanks to the generosity of our donors, The Ehlers-Danlos Society pledged $500,000 over five years to support the opening of the Indiana University Health Center for Ehlers-Danlos Syndromes: a clinic committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. IU Health Foundation committed to a partially matched donation following the pledge.

Advocacy and Care

We are committed to our global mission, supporting communities worldwide, and educating health professionals to diagnose, care for, and treat them. We have toll-free international helpline numbers for 28 countries, and an email helpline, to provide our communities with dedicated support. 10-15% of our helpline calls are from medical professionals seeking advice and resources for patients. We host several virtual online support groups each month, and we have vibrant and dazzling online communities.

By uniting support groups and charities from around the world, we aim to provide resources and information where they are needed. We work with our affiliates on local issues and projects that affect our communities around the globe. One person fighting is a start, but many together build an army.

We strive to give hope to all those whose lives are affected by EDS and HSD. Building our community is therefore vital. We will work hard to support, inform, and guide those affected by and living with EDS and HSD with up-to-date, accessible information to improve their care and wellbeing.

Our People

Our History

The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). The 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, often dangerous forms—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of Ehlers-Danlos patients, caregivers, and medical professionals.