EDS ECHO Advocacy Application

EDS ECHO Advocacy

This is a free to join virtual program delivered via the Zoom platform for those wishing to raise EDS and HSD awareness
around the world and where you live

Please complete the application form below to apply for a place on the EDS ECHO Advocacy (PP10) Program.

EDS ECHO Advocacy (PP10) – Program Details:

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. For more information, visit our dedicated EDS ECHO Advocacy web page.

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.

Session Program: EDS ECHO Advocacy (PP10) Date & Time: Wednesdays 12:00pm – 1:30pm  Eastern Time (US & Canada)

Advocacy and Breaking Down Barriers



Public Speaking



How to Present Information on EDS and HSD 101






Political Awareness and Lobbying



Understanding the Research Process



Social Media


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

Please visit https://www.worldtimebuddy.com, or your preferred time zone converter to confirm the correct start time in your location.

The program content is currently only presented in English.

This is a virtual program, you will be sent a link to join the sessions which are run via the zoom platform. Once signed up, we ask that you attend a minimum of 5 out of the 10 sessions. You can catch up with the sessions you miss by watching our password protected recordings online. For all queries regarding EDS ECHO, please email our EDS ECHO Program Coordinator.

Please complete and submit the following information to apply for a place on EDS ECHO Advocacy (PP10) the program:

Applications for the the next EDS ECHO Advocacy (PP10) will open later this year.