Change Futures, Support EDS ECHO Today

Everything we do at EDS ECHO supports people suffering today and helps prevent their symptoms from progressing tomorrow, ensuring a better future for every child and adult diagnosed with these conditions.

Validation, Diagnosis, and Care

At EDS ECHO we are supporting doctors, nurses, therapists, midwives, pharmacists, health and social administrators, and community leaders and educators, worldwide, to be better informed and confident in their diagnosis and management of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and to provide care locally.

In 2023 EDS ECHO will cost $225,000, to deliver our wide portfolio of programs free to participants around the world.

We cannot do this without your support.

EDS ECHO: Changing Futures

One of our major goals is to provide world-class educational programs. To this end, EDS ECHO is a virtual program from The Ehlers-Danlos Society that helps health professionals, advocates, and community leaders worldwide to improve their knowledge of EDS and HSD, and better care for and support individuals and communities living with these complex conditions. We are delighted have had more than 1100 healthcare professionals and 380 community participants join EDS ECHO since its launch.

In April 2019, The Ehlers-Danlos Society started the EDS ECHO program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our programs and courses have grown to be worldwide, supporting healthcare professionals across multiple disciplines and community advocates and leaders in EDS and HSD.

In the video to the left, EDS ECHO leads, Dr. Clair Francomano and Dr. Alan Hakim take a look back at what has been achieved and how far we have come in a global effort to improve the lives of people living with EDS and HSD.

Every gift counts.

Together, we can advance education and care for people and families living with EDS and HSD, worldwide.

Donate by check

United States: As a 501c3 organization, your donation is a tax-deductible charitable contribution. EIN# 38-2813140. To donate by mail, send a check (payable to The Ehlers-Danlos Society) to 447 Broadway, 2nd FL #670, New York, NY 10013; USA. Please reference your donation with ‘EDS ECHO’ to confirm its designation.

United Kingdom: As a registered charity in England and Wales (1180984), your donation is eligible for Gift Aid. To donate by mail, send a check (payable to The Ehlers-Danlos Society) to Office 7; 35-37 Ludgate Hill; London, EC4M 7JN; UK. Please reference your donation with ‘EDS ECHO’ to confirm its designation.

Contact us to discuss making a gift

To arrange a call to discuss how you can help, email the EDS ECHO team at [email protected] 

The interdisciplinary model of EDS ECHO has allowed me to build a massive network to help my patients, and to learn more about each specific system involved in the healthcare of my patients with Ehlers-Danlos syndromes.

I think as important as the EDS diagnosis in itself, it was very valuable to identify the many comorbidities that this population has. More in-depth screening for specific comorbidities associated with EDS will be something to implement in my assessments.

Great discussions, great presentations, lots of new evidence, and wonderful learning about things colleagues are finding to help their patients.

Changing Futures

In 2022 we launched our first Spanish EDS ECHO program, held from hubs in North and South America, and training Spanish-speaking healthcare professionals around the world. Our aim is to develop our network and reach of programs worldwide, increasing the languages the program is delivered in, and improving care and quality of life for people worldwide living with the complexities of EDS and HSD. 

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