Published: 18/12/2015 Tags: The Ehlers-Danlos Society News

Ehlers-Danlos Syndrome: No longer invisible

For too many years, people affected by Ehlers-Danlos Syndrome have suffered quietly, fighting through each day with little hope, and even less visibility to the medical world.

As of May 2016, Ehlers-Danlos Syndrome will no longer be invisible to the world.

Together, the people of the Ehlers-Danlos Society will join with an internationally renowned group of physicians, scientists, advocates, and health professionals to launch a global symposium to redefine the standards for diagnosis, testing, and clinical care — The Ehlers-Danlos Society International Symposium.

To further advance our cause, our global medical advisory board will team up with some of the world’s top patient advocates to launch The Ehlers-Danlos Society, an international non-profit organization united in our cause to strengthen the connections between Ehlers-Danlos patients, physicians, families, and caregivers in an effort to improve patient care—worldwide.

The Ehlers-Danlos Society will help those patients who wonder why their hips or joints were dislocated multiple times, why their skin tears and scars so easily or why they’re often too weak to move. We will help those facing the long-term psychological impacts of Ehlers-Danlos: heightened depression from years of lacking validation, frustration that doctors think they’re hypochondriacs, and social maladjustment from being held back a grade for excessive school absenteeism. It is for these people that the Ehlers-Danlos National Foundation (EDNF) was founded in 1985 and now thirty years later, we seek to extend our position as the leading organization for EDS information and resources in the United States to the entire world.

Together We Can Accomplish Even More

EDUCATE by providing educational materials in an effort to build awareness and understanding.

CONNECT patients, physicians, and caregivers to share ideas and knowledge. With over 26,000 Facebook likes and more than 4,000 Twitter followers, we are poised to reach thousands and thousands more.

INNOVATE through our partnership with the Greater Baltimore Medical Center (GBMC). We helped to establish the EDNF Center for Research & Clinical Care at GBMC’s Harvey Institute for Human Genetics to care for patients, conduct professional education, and provide cutting-edge research for physicians throughout the world.

ADVOCATE as the voice for EDS on the local, regional, and global stage, as we advance the need for government investment in Ehlers-Danlos research, awareness, and patient care, demonstrating through data and our personal EDS stories how policy changes can improve the lives

We’re excited that 2016 has the potential to transform the EDS community. But it will take hard work, and your support, to turn that potential into reality.

Please join this effort by making a financial gift today! We promise that every one of your hard-earned dollars will be greatly valued and carefully used. Every gift counts.

Thank you for your support,


Shane Robinson
Executive Director

The Ehlers-Danlos Society

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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