Advocacy ECHO

EDS ECHO Advocacy Program

Please note: Our Advocacy ECHO programs are full for the remainder of 2021. We will open applications for our 2022 programs later this year.

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.

Advocacy ECHO 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. 

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.

To view the previous recordings of Advocacy ECHO please click the relevant program link below. Please note, you will need the password to access these resources:

To view previous video recordings of our Patient Expert ECHO, PP1 sessions please click here.