Ehlers-Danlos Society

The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). The Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos research, patient support, and public advocacy, have been felt around the world.
 
From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of Ehlers-Danlos in its many, often dangerous forms—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of Ehlers-Danlos patients, caregivers, and medical professionals.
 
Mission:
The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
 
We are proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.
Internship Tasks:
 
Overview of Responsibilities:  
The Events Intern will be responsible for the overall support for the Events team. This will include day-to-day administration and general support and tasks pre-event, onsite, and post-event. This is an ideal role for someone of graduate caliber with great people skills, looking for an interesting and challenging administration role in the events sector with which to progress in their career. 
 
What You Will Do  
You’ll be working in a highly demanding and ever-changing environment. Primarily, this role entails pre-recording event speakers’ presentations over Zoom. Full training and support will be provided. 
 
Requirements:
You are: 
● A self-starter who actively seeks projects to work on  
● A confident communicator comfortable speaking with stakeholders at various levels 
● An excellent listener who understands how to deliver the right messages at the right time 
● Able to work independently 
● Fluent in English (other languages would beneficial)  
● Proficient in Microsoft Office (Outlook, Excel, PowerPoint)
 
You have:
● The ability to meet deadlines, multitask under pressure, and efficiently manage time 
● A keen eye for detail 
● Experience and familiarity using Zoom and its features 
● A can-do, motivated attitude 
● The desire to thrive in a team environment, as well as to be able to work independently  
2021-08-05 | Scottsdale, AZ USA – Global Learning Conference
2021-04-24 | Paris, France – European Learning Conference
2020-07-09 | Scottsdale, AZ USA – Global Learning Conference
2020-03-21 | Paris, France – European Learning Conference
2019-11-02 | Edinburgh, UK – European Ehlers-Danlos Syndromes Conference
2019-04-06 | Madrid, Spain – Conference
2018-12-07 | Sydney, NSW Australia | Perth, WA Australia – Conference
2018-09-26 | Ghent, Belgium – International Symposium on the Ehlers-Danlos Syndromes
2018-08-02 | Baltimore, MD USA – Global Learning Conference
2018-04-06 | Maastricht, Netherlands – European Ehlers-Danlos Syndromes Conference
Relations with Non-Governmental Organizations
J-XM7891 – International Consortium on Ehlers-Danlos Syndromes and Related Disorders (International Consortium on EDS and Related Disorders).
 
Members:
N/A