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®

Visit echo.unm.edu

EDS ECHO®
An Evolution in Medical Education and Care Delivery

We are starting with two hubs, one in Baltimore, MD, 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 interested participants to start a regional clinical group for the care of their patients, expanding the EDS ECHO® network, and bringing care closer to home.

Share.
Learn.
CONNECT.

Three Steps To Join

 
1

Email us echo@ehlers-danlos.com and include the following information. Please note that we are GDPR compliant. Please include:

  • The center you would like to join (Baltimore or London);
  • The program number for the session you want to attend (see the section “When are upcoming 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.

2

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

3

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 ZOOM.us.

ECHO sessions will last approximately 90 minutes.

 BALTIMORE
 

Mondays at 1:00 pm
Eastern Daylight Time

April–May ‘19Program No. 1A
Week 1April 15
Week 2April 22
Week 3May 6
Week 4May 13
Week 5May 20
Week 6June 3
Week 7June 24
Week 8July 15
Week 9July 22
 LONDON
 

Tuesdays at 6:00 pm
Greenwich Mean Time

April–July ‘19Program No. 1B
Week 116 April
Week 223 April
Week 37 May
Week 421 May
Week 528 May
Week 64 June
Week 725 June
Week 89 July
Week 916 July
 BALTIMORE
 

Mondays at 1:00 pm
Eastern Daylight Time

September–December ‘19Program No. 2A
Week 1September 9
Week 2September 16
Week 3September 23
Week 4September 30
Week 5October 7
Week 6October 14
Week 7October 28
Week 8November 4
Week 9November 11
 LONDON
 

Tuesdays at 6:00 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

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?”


INITIAL LEARNING MATERIALS

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