Profile cover photo
Profile photo
The Ehlers-Danlos Society
Our strength begins with hope
Our strength begins with hope

The Ehlers-Danlos Society's posts

Post has attachment
We bring you news of a promising federal bill that could mean an advance in access to integrative pain care no matter where you live. The ask? Show your support of Senate Bill 2873, up for a hearing this Wednesday 9/21, in the Senate HELP Committee, by retweeting the following or sending a letter to members of the Senate HELP Committee.

Support S2873 Echo Act to authorize study. Use technology to bring high quality care, specialists to rural areas @ProjectECHO @HELPCmteDems

Support S2873 Echo Act to authorize study. Use tech to improve care 4 patients, esp rural areas #NationalPainStrategy @ProjectECHO @GOPHELP

Read on to learn why Senate Bill 2873 is important in the fight to improve access to integrative, multimodal pain care for everyone, no matter where you live. To read the bill, go to

For millions of people, accessing high quality, specialized care from an integrative care team is not possible, or certainly not easy. While these challenges are felt by all, they are compounded for those in rural areas who have extremely limited options when it comes to local health care providers. And what’s more, health care providers living in rural areas have limited opportunities to discuss complex patient cases with a variety of specialists. That’s where the Project ECHO model comes in.

Project ECHO links expert specialist teams at an academic hub with primary care clinicians in local communities. Primary care clinicians, the spokes of the model, become part of a learning community, where they receive mentoring and feedback from remote specialists. Together, they manage patient cases so that patients get the care they need.

Senate Bill 2873, known as the “ECHO Act”, authorizes a study to examine the use of, and opportunities to use, technology-enabled collaborative learning and capacity building models to improve programs of the Department of Health and Human Services. We strongly believe that the outcomes of such a study would encourage the legislature to take action to ensure that technology is used to its fullest to bring high quality care to all patients, regardless of their geographic location.

The ECHO Act is being reviewed by the Senate Health, Education, Labor & Pensions Committee on Wednesday of THIS WEEK (September 21). We are hoping it will receive the unanimous support of the HELP committee members and move to the full Senate, and pass quickly.

Please join us in supporting the ECHO Act by Tweeting the above tweets to the members of the Senate HELP Committee TODAY!

(#PainChampions is grateful to State Pain Policy Advocacy Network - SPPAN​ for providing this opportunity.)

Post has attachment
September is Pain Awareness Month, and for the next year — through Pain Awareness Month 2017 — The Ehlers-Danlos Society is partnering with The Pain Community to foster awareness of pain in association with Ehlers-Danlos syndromes (EDS), how we can approach treating pain, and along the way, we hope for some advocacy opportunities, too. Read the first article, "Ehlers-Danlos Syndromes and Pain," at or on Facebook at

Post has attachment
September is Pain Awareness Month. To mark this annual event, +The Ehlers-Danlos Society and The Pain Community are joining in a year-long project to bring awareness to our communities about Ehlers-Danlos syndromes and pain.

Each month will bring a new article on our sites, and, and the project will culminate in what we hope will be a more widely noted Pain Awareness Month in 2017.

Along the way, deeper discussion about each month’s article, and ways to become further involved, will be offered through a blog on as well as through our social media. Look for the inaugural article on September 15 in the society’s new blog, ‘Pain Champions’.

#ehlersdanlos #ehlersdanlossyndrome #pain #painawareness #chronicpain

Post has attachment
Many of you have asked when you will be able to see the work that has come out of the new International working group and symposium. The article will be published in the American Journal of Medical Genetics with the new nosology and management and care guidelines in March 2017 (date may be subject to change).

The article will be available on our website for free as soon as it is published, and a lay version will also be available.

We will release the slides and audio from the conference which is the work presented at the symposium and shows the working process we are doing to get to the article.

We have waited nearly twenty years for this and we appreciate your patience for the next few months. We assure you that we have over 90 people dedicated to giving us the very best chance, so that medical professionals globally actually take on these guidelines.

#ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #hypermobilitysyndrome #vEDS #vascularEDS #vascular #zebrastrong

Post has attachment
Designed to empower, dramatically advance global understanding of Ehlers-Danlos Syndrome and share the new categorised diagnostic criteria, today marked the first day of our Global Learning Conference in Baltimore, USA.

Communities from around the world came together to dazzle and participate in discussions and talks in a place they felt at home. Speakers included Dr Peter Byers who presented the latest research and explained the diagnostics for people with Vascular EDS along with the importance of a local care team.

Dr Clair Francomano held a General Session, talking about the rarer types of EDS and how these can be diagnosed and managed. We are striving towards a time when all those with Ehlers-Danlos Syndrome have their right for an early diagnosis, good management, respect and recognition for their condition.

Check back tomorrow for highlights from day 2 of the ‪#‎ZebraStrong‬ Global Learning Conference.

It's our time.

#ehlersdanlos   #ehlersdanlossyndrome   #hypermobile   #hypermobility   #hypermobilitysyndrome   #JHS   #EDS   #EDSHT   #HEDS   #chronicpain   #nonprofit   #zebra   #EDSzebra   #conference   #Baltimore   #vascularEDS   #vEDS  

Post has attachment
+The Ehlers-Danlos Society will host ‪#‎ZebraStrong‬, a rally in Baltimore’s Inner Harbor to build awareness for Ehlers-Danlos syndrome, an often painful and disabling, yet highly underdiagnosed and misdiagnosed genetic disorder, at 4:30pm on Saturday, July 16. The rally will immediately follow the Society’s Global Learning Conference which will be held at the Hilton Baltimore July 14-16.

Over 500 attendees are expected at the conference, and many will take part in the rally, which is open to the public.

The rally will be attended by people living with Ehlers-Danlos syndrome from around the globe, as well as their families and friends. Local elected officials and key EDS medical experts will be present to make remarks, and several EDS patients will share their stories.

The rally is being dubbed “Zebra Strong” because the zebra is the unofficial mascot of the EDS community—and the identity of The Ehlers-Danlos Society.
In medicine, the term “zebra” is used to describe a rare disease or condition and the majority of the types that make up the Ehlers-Danlos syndromes are rare. For many, many decades, physicians have been taught, “When you hear hoof-beats, think horses, not zebras.” Many in the Ehlers-Danlos community believe this aphorism has impeded diagnosis of Ehlers-Danlos and other rare diseases by discouraging many physicians from making diagnoses of rare or unusual disorders, particularly Ehlers-Danlos.

“In claiming the zebra as our identity, we are saying it’s our time to fight for early diagnosis, greater research funding, and a stronger community to voice our concerns,” states co-executive director Lara Bloom.
“People with Ehlers-Danlos have been overlooked for too long. Lack of awareness and understanding is literally costing lives throughout the world.”
“We are tired of waiting. Too many are disabled, disillusioned, or dying. This is our time to take action. We want the world to understand the suffering Ehlers-Danlos causes and the need for greater awareness, expanded research, earlier diagnosis, and better treatment — worldwide,” states co-executive director Lara Bloom.

“This is a movement. To cut through the noise in an election year, we are taking our cause to directly to the public. Through patient testimonies, interactive experiences, and our media campaign, we seek to build real, first-hand awareness across the U.S. and throughout the world,” says Shane Robinson, Maryland Assembly person and fellow co-executive director of The Ehlers-Danlos Society.

Lara Bloom adds, “#ZebraStrong will be a demonstration of our hope, our strength, and our resolve to show the world that while we are stronger than our ailments — and we are unwilling to let our pain steal another moment from our lives. Our pain is real, relentless and demanding of treatment wherever we live in the world!”

Ehlers-Danlos syndrome is a collection of heritable connective tissue disorders characterized by hypermobile joints (joints that move in greater amounts than expected), skin involvement, and tissue fragility. Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, and ligaments. Either directly or indirectly, EDS is known or thought to alter the biology of collagen, the most abundant protein in the body, which can lead to multi-systemic symptoms. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue. Depending on the individual, the severity of EDS can vary from mild to life-threatening.

For more information on the rally, please email: or click here:

Please share this post to help us reach people globally and raise awareness.

#ehlersdanlos #ehlersdanlossyndrome #EDS #vascularEDS #hypermobile #hypermobility #hypermobilitysyndrome #HEDS #chronicpain #nonprofit #rally 

Post has attachment
Pain Management In Ehlers-Danlos Syndrome ~ Presentation by Pradeep Chopra, MD

Chronic, early onset, debilitating musculoskeletal pain is usually associated with hypermobile EDS (hEDS). Pain can be one of the most difficult symptoms for patients, and many in the community have found their pain being minimized by their doctors and not yet found a treatment balance that helps.

Dr. Chopra discusses different treatment options offered at pain clinics which could benefit some patients:

Post has attachment
+The Ehlers-Danlos Society
Global Learning Conference 2016
July 14-16, 2016
Hilton Baltimore

Time is running out! Join us for the world’s largest gathering of Ehlers-Danlos Zebras!

This is our time to:

• Learn about the latest developments in research and care from the world’s top Ehlers-Danlos researchers and medical professionals
• Connect with other patients, caregivers, and allies
• Share your experiences—and learn how to build awareness
• Show your strength at our first annual rally to raise awareness at Baltimore’s Inner Harbor

Event Schedule:

Dynamic Kids & Teens Programs

Our conference offers safe space for young zebras 5-17 to meet others to share experience, friendship, and hope, as they learn how to become #ZebraStrong!

Register now!

Click here to book tickets for the conference

To become a member and to take advantage of member registration rates, please click here:

“The Learning Conference is the one place I go where my disease isn’t invisible, and where everybody I talk to understands.”

Hotel Information & Reservations

The Ehlers-Danlos Society has secured a discounted room rate of $164.00 per night plus tax at the Hilton Baltimore. Discounted room rates are available until Thursday, June 23, 2016 or until the block is filled. Please call 1-888-243-9694 and request The Ehlers-Danlos Society Conference room block to ensure you receive the discounted rate.

#ehlersdanlos #ehlersdanlossyndrome #hypermobile #classical #vascular #vascularEDS #hEDS #hypermobility #hypermobilitysyndrome #zebrastrong

Post has attachment

Post has attachment
Wait while more posts are being loaded