EDS ECHO EDS & HSD Community

EDS ECHO Community

EDS ECHO Programs for the EDS & HSD Community

EDS ECHO runs two programs for the EDS and HSD Community. Both programs explore the ways participants can better teach and support those living with EDS or HSD. 

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. 

The EDS ECHO Community Leaders & Educators program explores ways participants can better teach and support those living with a type of EDS or HSD. This program is perfect for support group and organization leaders as well as others who strive to educate our community about how to feel and function as well as they can.

How are sessions structured?

The EDS ECHO Advocacy program takes place over 7 sessions and offers participants tools needed to advocate effectively. Each session is 1hr 30 minutes in length and uses the Zoom platform. The format of most sessions will include didactic learning, a Q&A open discussion about the topic, and participants will be invited to share and present their advocacy examples throughout the program.

The Community Leaders & Educators program takes place over 8 sessions. Each session is 1hr 30 minutes in length and uses the Zoom platform. The format of most sessions will include didactic learning, community members describing the session topics in real world situations, a Q&A open discussion about the topic, and break out room learning exercises to gain skills related to the topic of the session.

Please scroll down to view more details about each program.

Who can participate?

EDS and HSD Community programs are open to participants who would like to be active advocates around the world who are willing to help raise awareness of EDS and HSD; and, for support group and organization leaders as well as others who strive to educate our community about how to feel and function as well as they can.

How much does it cost to join an EDS ECHO Program?

The EDS & HSD Advocacy and Community Leaders and Educator programs are free to join.

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EDS ECHO ADVOCACY

EDS ECHO Advocacy is a seven-week program to provide you with the tools needed to advocate effectively. The program is designed to create active advocates around the world who are willing to help raise awareness of EDS and HSD.

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.

The EDS ECHO Advocacy program takes place over 7 sessions and offers participants 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 and support active advocates around the world who are willing to help raise awareness of EDS and HSD. Participants in the program will be asked not to share their personal medical history or experiences, but to share their knowledge and tips about advocacy.

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 participants who wish to teach and support people in the community living 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.

EDS ECHO COMMUNITY LEADERS & EDUCATORS

The EDS ECHO Community Leaders & Educators program explores ways participants can better teach and support those living with a type of EDS or HSD. This program is perfect for support group and organization leaders as well as others who strive to educate our community about how to feel and function as well as they can.

EDS ECHO Community Leaders & Educators

About EDS ECHO Community Leaders & Educators

The EDS ECHO Community Leaders & Educators program explores ways participants can better teach and support those living with a type of EDS or HSD. This program is perfect for support group and organization leaders as well as others who strive to educate our community about how to feel and function as well as they can. 

The program is led by Shani Weber and Rebecca Gluck and takes place over 8 sessions. Each session is 1hr 30 minutes in length and uses the Zoom platform. 

The format of most sessions will include didactic learning; community members describing the session topics in real world situations; a Q&A open discussion about the topic; and, break out room learning exercises to gain skills related to the topic of the session. Participants who attend five or more sessions will receive a certificate of attendance at the end of the program.

The curriculum will cover the following subjects:

  • Session 1: Teaching Basics
  • Session 2: Effective Doctor Appointments
  • Session 3: Advocating for Yourself and Others
  • Session 4: Starting and Running a Support Group
  • Session 5: Support and Education on Social Media
  • Session 6: Conflict Resolution
  • Session 7: How to Find Accurate, Reputable Information
  • Session 8: How to Answer Questions and be Supportive 

Help us to create a dazzling global army of Community Leaders and Educators – and inevitably, a better quality of life for all who suffer from these conditions. 

Our strength begins with hope, our hope begins with you.

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