This is a free to join virtual program delivered via the Zoom platform for those wishing to advocate for patients with EDS and HSD.
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 inlcude 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.
Topics included in this program are:
- What is an advocate?
- Public speaking
- How to present on EDS and HSD 101
- Social media
- Political awareness and lobbying
- Understanding the research process
The program content is currently only presented in English.
If you have already applied, you are welcome to apply again if you would like to update us on changes in your circumstances. If nothing has changed, you do not need to apply again, your original application will be reviewed and considered again for this program.
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.
Applications are currently closed for this program, please check back to this page as the application form will be available here for future dates.