EDS ECHO Advocacy

EDS ECHO Advocacy

About EDS ECHO Advocacy

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.

The program is led by Shani Weber and takes place over 7 sessions. Each session is 1hr 30 minutes in length and uses the Zoom platform. 

Please note, the EDS ECHO Advocacy program is not designed to give advice on how to best navigate your condition or access to care. For those wanting to receive this help and support please contact our Helpline or join one of our Let’s Chat virtual support groups for management tips.

You may also be interested in our EDS ECHO Community Leaders & Educators (CLE) program. Whilst EDS ECHO Advocacy is focused on representing the community to advocate for change that helps those living with a type of EDS or HSD, The EDS ECHO CLE Program is focused on teaching and supporting those who live with a type of EDS or HSD.

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.


PLEASE NOTE – There are a maximum of 80 places available for this program. Session dates and topics are subject to change.

To view the previous recordings of Advocacy ECHO please click the relevant program link below.

Please note, the program content is only available to those who are participating in the program. You will need the password to access these resources.

Support EDS ECHO

Support EDS ECHO