EDS ECHO EDS & HSD Community

EDS ECHO is planning a new program in advocacy and community support for 2023

We know that many of you want to make a difference by raising awareness of EDS and HSD, and forging change.

At EDS ECHO we developed an Advocacy program and Community Leaders & Educators program which, from 2020 to 2022, supported over 400 participants in developing skills to raise awareness and support people with EDS and HSD.

We are excited to be developing a new program to be led by members of the EDS and HSD community for members of the community wishing to develop advocacy skills. We will announce more details about this program later in 2023.

Please check our ECHO home page, social media announcements, or subscribe to our EDS ECHO Newsletter for program announcements and updates.

Participant Testimonials:

Watch a selection of previous EDS ECHO Advocacy and Community Leaders & Educators presentations

At EDS ECHO we have put together for you a selection of speaker presentations from our Advocacy and our Community Leaders and Educators programs. Topics include advocating for yourself and others, fundraising, social media, EDS 101, and starting a support group. We really hope you enjoy watching them and that they give you lots of ideas.

The programs were led by Shani Weber, with presentations from a variety of community, healthcare professional and specialist guest speakers.

The EDS ECHO Advocacy program was designed to create active advocates around the world who were willing to help raise awareness of EDS and HSD.

The EDS ECHO Community Leaders & Educators program explored the ways participants could better teach and support those living with a type of EDS or HSD. The program was for support group and organization leaders as well as others who strived to educate and support our community.