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“Academy for Education & Training Excellence”

Leadership. Education. Advocacy. Dedication. Empowerment. Drive. Support.


The mission of our EDS Leadership program is to train and support existing and potential future leaders to help their members with managing EDS and related conditions.

Our Purpose

Leadership, Advocacy, Education & Dedication for those affected by Ehlers-Danlos syndromes (EDS) and related conditions.

Our Goal

Empowering Responsible Patient Advocacy, Facilitating Positive Healthcare Partnerships & Fostering Self-efficacy


Building and supporting well educated, confident leaders. The program recognizes the important role of EDS leaders who help connect, support and educate their members. This membership offers leadership development programs and resources designed to serve local support groups, Facebook and advocacy groups at all stages of their development.

WHY Ehlers-Danlos Syndromes Leadership Training and Support

  • Many with EDS want to help others who have similar conditions
  • Most with EDS have no organizational experience or training
  • Group leaders have good days and bad days and need help
  • EDS resources are rarely known and generally unavailable
  • Legal concerns need to be understood to protect all




Resources from LEAD EDS 2019

Conference Agenda & Speakers

Watch Presentations

Download Resources

Read Press Release

May 2019 EDS Leadership Event Press Release PDF

View Photo Gallery – coming soon!

Watch 2019 Event Video – coming soon!


Sponsors & Partners

Thanks to our sponsors & partners for their support!