Lead EDS 2019 Resources

Watch the presentations and download resources from this year's event.


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.

“Academy for Education & Training Excellence”

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

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

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


EDS Leadership Introduction

with John Ferman


Organizing & managing your Facebook and Social Media

with Maria Dastur


Organizing and managing your support group

with Andrea Julian


Support group member “Advocacy”

with Amanda Aikulola


Mandy Harvey Interview

with John Ferman


Business and Social Guidelines

with Kendra Neilsen Myles


EDS the Invisible Medical Condition

with Dr. Linda Bluestein


Children's Support Groups

with Cathy Rouhier