EDS ECHO Advocacy Application

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This is a free to join virtual program delivered via the Zoom platform for those wishing to advocate for patients with EDS and HSD.

Please complete the application form below to apply for a place on the EDS ECHO Advocacy (PP9) Program.

EDS ECHO Advocacy (PP9) – Program Details:

The EDS ECHO Advocacy 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 subject being covered in the curriculum.

The Advocacy ECHO 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.

A small number of spaces have become available for the next EDS ECHO Advocacy program commencing on October 20th, 2021. This program has been scheduled to be suitable for participants in Europe, Africa, Central and East Asia, and, Australasia. If you would like apply for a place on the program, please complete the application form below. As we expect high demand and will not be able to accommodate everyone, we ask that you only apply if you can attend at least 5, and preferably all 7 sessions.

Please see the table below for the program schedule. If you are interested in, but unable to join the program starting in October, we are delighted to inform you that in October we will announcing further Advocacy programs for 2022. 

SessionProgram: EDS ECHO Advocacy (PP9)Date & Time: Wednesdays 1:00pm – 2:30pm  London (UK Time)
1

Advocacy and Breaking Down Barriers

Oct 20, 2022

2

Public Speaking

Oct 27, 2022

3

How to Present Information on EDS and HSD 101

Nov 3, 2022

4

Fundraising

Nov 10, 2022

5

Political Awareness and Lobbying

Nov 17, 2022

6

Understanding the Research Process

Nov 24, 2022

7

Social Media

Dec 1, 2022

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

Help us create a dazzling global army and achieve world-wide awareness – and inevitably, a better quality of life for all who suffer from these conditions.

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

Please complete and submit the following information to apply for a place on EDS ECHO Advocacy (PP9) the program: