EDS ECHO Advocacy

EDS ECHO Advocacy Program

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.

EDS ECHO Advocacy is a focused seven-week program to provide you with the tools needed to advocate effectively. The curriculum will cover:

  • What is an Advocate?
  • Public Speaking
  • How to present on EDS and HSD 101
  • Social Media
  • Fundraising
  • Political Awareness and Lobbying
  • Understanding the Research Process

This EDS ECHO program is designed to create active advocates around the world who are willing to help raise awareness of EDS and HSD. Successful candidates will be asked not to share or discuss their personal medical history or experiences, and instead to share their knowledge in a de-identified manner throughout.

Participants will be invited to share and present their “Advocacy Examples” throughout the program. Advocacy examples can include examples of the ways you have previously or would like to advocate for yourself or others, based on the subjects being covered in the curriculum.

This ECHO program is not designed to give advice on how best to navigate your condition or access care. For those wanting to receive this help and support please sign up for our ‘Ask the Helpline’ monthly support group where tips and tricks will be given and support and advice on how best to manage life with this condition. 

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

Program dates (PP3) 2020 

Wednesdays at 12 noon to 1:30 pm Eastern Time (US and Canada)

  • June 3rd
  • June 10th
  • June 17th
  • June 24th
  • July 1st
  • July 15th
  • July 22nd

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.