Ehlers-Danlos syndrome

Common Name(s)

Ehlers-Danlos syndrome

Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissue, which supports the skin, bones, tendons, ligaments, blood vessels, and other organs. The signs and symptoms of EDS vary by type and range from mildly loose joints to life-threatening complications. An unusually large range of joint movement (hypermobility) occurs with most forms, particularly the hypermobility type. Many people with EDS also have soft, velvety skin that is highly elastic and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. Some forms of EDS, notably the vascular type and kyphoscoliosis type, can involve serious and potentially life-threatening complications. EDS may be caused by mutations in any one of several genes; the inheritance pattern varies by type.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition " Ehlers-Danlos syndrome " for support, advocacy or research.

Chiari & Syringomyelia Foundation

Our mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

Last Updated: 18 Mar 2013

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EDS Today

Is to provide Ehlers-Danlos information, awareness, education, guidance and support for all those affected. Also for their families, the general public and those in the medical community. We strive to bring recognition, identification and a correct diagnosis for ALL those affected. They are guided towards knowledgeable (skilled) medical professionals, appropriate treatments, preventive management, interventions and monitoring. We advocate, support, assistance with medical crisis, networking and navigating the medical system. We help to foster funds for vital EDS research projects that could help improve the future and quality of life for the EDS patient. We are committed to this mission!

Last Updated: 29 Apr 2014

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Ehlers-Danlos National Foundation

Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome.

Last Updated: 4 Mar 2013

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Oklahoma Family Network

To Provide emotional, informational and navigational support to those who have special health care needs or a disability, their families and the professionals who serve them. OFN promotes family/professional partnerships and family-centered care, assuring services are offered as recipients prefer..

Last Updated: 15 Apr 2013

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General Support Organizations

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How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition " Ehlers-Danlos syndrome " for support, advocacy or research.

Chiari & Syringomyelia Foundation

Our mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

http://www.CSFinfo.org

Last Updated: 18 Mar 2013

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EDS Today

Is to provide Ehlers-Danlos information, awareness, education, guidance and support for all those affected. Also for their families, the general public and those in the medical community. We strive to bring recognition, identification and a correct diagnosis for ALL those affected. They are guided towards knowledgeable (skilled) medical professionals, appropriate treatments, preventive management, interventions and monitoring. We advocate, support, assistance with medical crisis, networking and navigating the medical system. We help to foster funds for vital EDS research projects that could help improve the future and quality of life for the EDS patient. We are committed to this mission!

http://www.edstoday.org

Last Updated: 29 Apr 2014

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Ehlers-Danlos National Foundation

Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome.

http://www.ednf.org

Last Updated: 4 Mar 2013

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Oklahoma Family Network

To Provide emotional, informational and navigational support to those who have special health care needs or a disability, their families and the professionals who serve them. OFN promotes family/professional partnerships and family-centered care, assuring services are offered as recipients prefer..

http://www.oklahomafamilynetwork.org

Last Updated: 15 Apr 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms " Ehlers-Danlos syndrome " returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms " Ehlers-Danlos syndrome " returned 0 free, full-text review articles on human participants.

 
 
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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Head Circumference Growth in Children With Ehlers-Danlos Syndrome Who Develop Dysautonomia Later in Life
 

Status: Recruiting

Condition Summary: Ehlers Danlos Syndrome; External Hydrocephalus; Dysautonomia; Postural Orthostatic Tachycardia Syndrome; Venous Insufficiency

 

Last Updated: 5 Jun 2011

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Biomarkers in Vascular Ehlers-Danlos Syndrome
 

Status: Recruiting

Condition Summary: Vascular Ehlers-Danlos Syndrome

 

Last Updated: 13 Jun 2014

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Wearing a Compression Garment for Patients With Hypermobility Type of Ehlers-Danlos Syndrome
 

Status: Recruiting

Condition Summary: Ehlers-Danlos Syndrome Hypermobility Type

 

Last Updated: 8 Jul 2014

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