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The Ehlers-Danlos Society
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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
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+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: anna.haber@ehlers-danlos.com or click here: http://goo.gl/eORVQQ

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

#ehlersdanlos #ehlersdanlossyndrome #EDS #vascularEDS #hypermobile #hypermobility #hypermobilitysyndrome #HEDS #chronicpain #nonprofit #rally 
#ZebraStrong! The Ehlers-Danlos Society to Hold Rally in Baltimore’s Inner Harbor to Promote Awareness of Genetic Disorder Ehlers-Danlos Syndrome (EDS) The
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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: http://bit.ly/28WLAKN
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Have them in circles
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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  
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‪#‎ZebraStrong‬
+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: http://bit.ly/EDSschedule2016

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
http://bit.ly/EDSconferenceTickets

To become a member and to take advantage of member registration rates, please click here: http://bit.ly/28KPOUV

“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
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Global Learning Conference 2016 early bird registration has been extended to June 7! http://bit.ly/EDSconference2016

Scholarship applications will be available later this week.

The general schedule is sessions starting on Thursday afternoon (with the Welcome Reception that evening), sessions all day on Friday including during the provided lunch, and Saturday (again with a lunch session) until mid-afternoon. As this year the conference is centered on presenting the new categorized diagnostic criteria and treatment guidelines, most are general sessions presented to everyone. There will be a separate Young Zebras program.
Rate Type, Early Bird, Early Bird, Regular, Regular. Member, Non-Member, Member, Non-Member. Full Conference (Age 18+), $345.00, $400.00, $430.00, $490.00. Friday One Day, $160.00, $190.00, $215.00, $245.00. Saturday One Day, $160.00, $190.00, $215.00, $245.00. Kid (Age 5-10), $230.00, $230.00 ...
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Today is International Nurses Day and we are so grateful to the attentive nurses who care for and support those in hospital with Ehlers-Danlos syndrome.

Being aware of Ehlers-Danlos syndrome and the manifestations of each type, can ensure that patients are correctly monitored and treatment administered safely.

For more information on Nursing in Practice visit: http://bit.ly/1Opiq4k

#Nursing #InternationalNursesDay #EhlersDanlosSyndrome #hypermobility #hypermobile #vascular #vascularEDS #EDS
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210