Project ECHO

Project ECHO®
The Ehlers-Danlos Society


Enhancing care for people with all types of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) through case-based discussions, sharing knowledge, and expert updates.

This is a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions.

Project ECHO® addresses population health in a scalable way — moving knowledge instead of patients via telementoring and collaborative care.

The heart of the ECHO model™ is its hub-and-spoke knowledge-sharing networks, led by expert specialist teams. The ECHO model is not “telemedicine” where specialists assume the care of the patient; it is a guided model aimed at practice improvement, in which providers retain responsibility for patients, and gain increasing independence as skills, confidence, and self-efficacy grow.

Illustration of ECHO hub-and-spoke concept

For more about Project ECHO®


An Evolution in Medical Education and Care Delivery

We are starting 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 aim is to open hubs all over the world.

Clinical experts will run a rolling program that covers the main aspects of EDS and HSD.

Participants will be able to share their cases and questions in the sessions and will be guided to further educational materials and support.

CME/CPD credits will be available at no charge to participants.

After taking part in the program participants are invited to join us at any future EDS ECHO® sessions.

One of our greatest assets is the International Consortium, a group of independent expert clinicians, scientists, and patients from across many specialties. Our medical professional members run the EDS ECHO® program.

We will also help groups to start a program for the care of their patients, expanding the EDS ECHO® network, and bringing care closer to home. For more information click here.


Three Steps To Join

Please note, participants are permitted to sign up and join the current program before the start of session 3, after which time applications will be closed. You may still sign up at to be placed on the list to request a place on our next program.

Please note that we are GDPR compliant. You will be asked to include:

  • The program number for the session you want to attend (see the section “When are the upcoming EDS ECHO Professionals programs?”);
  • Your name, job title, work affiliation, and contact email address;
  • And if joining as a group, each member’s name, job title, work affiliation, and email address.

We will reply to confirm your choices, and provide you with the Zoom login information. Submit your case study here.


We use the teleconferencing platform ZOOM.

Click on the invitation link / meeting code that we will send you.

You do not normally need to download ZOOM first. It should automatically open up on your system and go straight to the meeting.

Remember to “Allow” ZOOM access to your computer / phone audio and camera.

If you want to check ZOOM works on your system before you start EDS ECHO you can do this for free at

ECHO sessions will last approximately 90 minutes.

United States


Time 12 noon
Eastern Time

September–December ‘19Program No. 2A
Week 1September 18
Week 2September 25
Week 3October 2
Week 4October 23
Week 5October 30
Week 6November 6
Week 7November 13
Week 8December 4
Week 9December 11

Thursdays at 5:00 pm
Eastern Time (US)

January–March ‘20Program No. 3A
Week 1January 9
Week 2January 16
Week 3January 23
Week 4January 30
Week 5February 13
Week 6February 20
Week 7February 27
Week 8March 5
Week 9March 12
Clinical lead, Dr. Clair Francomano

Thursdays at 5:00 pm
Eastern Time (US)

Spring/Summer 2020Program No. 4A
Week 1May 7
Week 2May 14
Week 3May 21
Week 4May 28
Week 5June 4
Week 6June 11
Week 7June 18
Week 8June 25
Week 9July 2

United Kingdom


Tuesdays at 12:00 pm
Greenwich Mean Time

September–December ‘19Program No. 2B
Week 110 September
Week 217 September
Week 31 October
Week 48 October
Week 515 October
Week 65 November
Week 712 November
Week 83 December
Week 910 December

Tuesdays at 12:00 pm
Greenwich Mean Time

January–April ‘20Program No. 3B
Week 114 January
Week 221 January
Week 328 January
Week 44 February
Week 511 February
Week 618 February
Week 710 March
Week 817 March
Week 97 April
Clinical lead, Dr. Alan Hakim

Tuesdays at 12:00 pm
BST (British Summer Time)

Spring/Summer 2020Program No. 4B
Week 15 May
Week 212 May
Week 319 May
Week 426 May
Week 59 June
Week 623 June
Week 730 June
Week 821 July
Week 928 July

General structure

Week 1 – Introduction, and making a diagnosis. Part 1 – hEDS and HSD
Week 2 – EDS diagnosis. Part 2 – rare types
Week 3 – Musculoskeletal complications and pain
Week 4 – Neurological complications
Week 5 – Maxillofacial / ENT, Upper Gastrointestinal concerns
Week 6 – Lower GI, inflammation and mast cell issues
Week 7 – Cardiovascular complications and Autonomic dysfunction
Week 8 – Urogynaecology, pelvic floor
Week 9 – Participant topics and next steps

We only ask that you join as many as you can. You can join any of the future sessions in any program. Zoom conferencing login details will be provided when you sign up to join us; please see “How do I join EDS ECHO?”


Reading materials are available from The 2017 EDS Classification – American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Videos are available through YouTube.

Week 1 – Diagnosis

Tinkle et alHypermobile Ehlers–Danlos syndrome
Castori et al. A framework for the classification of joint hypermobility and related conditions

Week 4 – Neurological & Pain

Henderson et alNeurological and spinal manifestations of the Ehlers–Danlos syndromes

To view previous video recordings of our EDS ECHO Professionals sessions please click here

This is a free-to-join program for patients with EDS and HSD.

We know that many of you want to know how to make a difference where you live, by raising awareness of EDS and HSD, and by forging change.

October 2, 2019 will see the commencement of the first Advocacy ECHO: a focused six-week program to provide you with the tools needed to become a patient advocate. The curriculum will cover advocacy, awareness, social media, public speaking, patient engagement, and more, so that you have the skills required to make the change.

We are looking for dedicated people to enroll into our Advocacy ECHO, who have the time to commit to raising awareness, and to each of the following session dates:

Time: 12 noon EDT


  • October 2, 2019
  • October 10, 2019
  • November 6, 2019
  • December 5, 2019
  • December 13, 2019
  • December 16, 2019

The program content is currently only presented in English. 

Help us to create a dazzling global army and achieve world-wide awareness—and inevitably, a better quality of life for all who suffer from these conditions.

Our strength begins with hope, our hope begins with you.

The Ehlers-Danlos Society has launched EDS ECHO, a program that seeks to support health professionals around the world in caring for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We currently have two hubs, one in the USA and one in the UK. From our hubs, we run 90-minute virtual teleECHO clinics via the Zoom conferencing platform.

Our long-term goal is to expand across the world, creating multiple hubs in different regions in many languages and covering all time zones, removing the barriers for any clinician who wishes to join in and learn about the diagnosis and management of the EDS and HSD.

EDS ECHO can take different shapes and forms according to each group’s needs. We can offer the administrative and clinical expertise to support a program and act as the hub for this, managing the administrative processes, while local clinicians lead the program. Alternatively, we can work with a group to find them a lead and their own local administrative team, supporting them to become an EDS ECHO Hub.

ECHO Options

The frequency and number of sessions in a program is flexible and could run weekly, fortnightly, monthly, or quarterly based on a group’s needs.

Specialty programs are for healthcare professionals with particular expert needs wishing to run specialty meetings, for example surgical disciplines, the rarer types of EDS, Paediatrics, Therapies, Gastroenterology and other medical disciplines.
Cost per session: For those interested in setting up a Speciality EDS ECHO financial support could be provided as part of the existing EDS ECHO funding.

Geographic programs develop existing or establish new networks for clinicians in particular regions or countries, anywhere around the world. These are encouraged to be run in the country’s local language.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Organization programs are for healthcare organizations such as hospital groups or community clinics wishing to establish multidisciplinary teaching, clinical mentoring and support developing and enhancing their organization’ services.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Setting up your own EDS ECHO Hub — If you wish to become a full EDS ECHO Hub there is training involved that includes Immersion Training with one of Project ECHOs SuperHubs. We can advise you further on this. Each newly established EDS ECHO hub will work closely with the existing hubs to develop mutually agreed curricula.
Costs: Please contact us to get costs on setting up your own EDS ECHO Hub.

Types of Programs

We currently run two structured concurrent 9-week rolling programs that cover all areas of EDS and HSD — from making the diagnosis to managing the related conditions. The programs are a combination of teaching presentations and case-based discussions. This is one example model, but there are other ways that this could be managed.

Structured sessions cover specific subjects in a pre-planned program over a set period of time. The number of sessions in a structured program is the choice of the program lead(s). This program may be repeated and/or be the initial engagement for the network before establishing longer term regular open sessions.

Open sessions are regular multi-disciplinary team meetings allowing discussion across the breadth of care as issues arise for participants within the group.

Mixed — a combination of Structured and Open.

Cost Breakdown

Depending on the group’s needs for administrative and clinical support the fees per session in US Dollars are:

Administration$32.50 per hour of support required for the whole program, and per session
IT Support$110.00 per session
Hub Facilities$120.00 per hour
Senior Clinical Facilitator$175.00 per session inclusive of preparation (total 2 hours)
Expert Invited Guest$250.00 per guest. Invited guests have the right to donate their fee to The Ehlers-Danlos Society.

Optional recommended addition

Quality Outcome Research: We encourage all programs to engage in the assessment of the educational value, changes to practice, and outcomes for patients. Our researchers and data repository are based at PennState University, USA. We base time commitment per program at a senior Associate Professor level university cost of $675 per day / $85 per hour.

The core team required to manage ECHO sessions includes:

The Administrator — the principal responsibility is setting up sessions, liaising with the nominated lead for the programme, case presenters and the facilitator, supporting spoke individuals and groups with any queries, ensuring the ECHO sessions and participant details are recorded on the iECHO database, and can also support the organization in applying for CME / CPD.

The IT support — principal responsibility is to ensure that the Society’s hub facilitation site equipment is functioning during a session and advise participants on IT issues arising during a session. We can also assist an organization in its preparation for running a program in terms of equipment and software requirements.

The Facilitator — a senior clinician with broad knowledge of EDS will support the development and running of sessions with the clinical lead(s) for the organisation / network, ensure maintenance of clinical governance, equal opportunities for participants, and support of Administration or IT as required.

If you would like to know more about getting involved in EDS ECHO then please contact us here.

EDS ECHO Recordings and Resources

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To view previous video recordings of our EDS Advocacy ECHO sessions please click here

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Click here to access this content. Note, you’ll need the password.

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