Lead EDS 2019 Resources
Watch the presentations and download resources from this year's event.
About LEAD EDS
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