Ehlers-Danlos syndrome
Please note that the links contained on this search results page may take you
to sites outside of the NIH. (See Disclaimer under Site Policies for details.)
Ehlers-Danlos syndrome is a group of disorders that affect connective tissue, the tissue that supports skin, bones, tendons, ligaments, blood vessels, and other organs. Defects in connective tissue cause the signs and symptoms, which vary from mildly loose joints to life threatening complications.[1]
For more information about Ehlers-Danlos syndrome click on the boxes below:
Click arrows to expand or collapse a Resource Section.
Show All Resources
Hide All Resources
- More Detailed Information (Found: 7 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
-
eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
-
The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and health care organizations representing millions of individuals with genetic conditions. Click on the link to view information on this topic.
-
Genetics Home Reference (GHR) contains a condition summary on Ehlers-Danlos syndrome. Click on the link to go to GHR and review this summary.
-
MedlinePlus, a Web site designed by the National Library of Medicine Web site to help you research your health questions, provides more information about this topic. Click on the link to view this information.
-
MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
-
The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
-
PubMed is a searchable database of medical literature and lists journal articles that discuss Ehlers-Danlos syndrome. Click on the link to view a sample search on this topic.
- Support Groups (Found: 11 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
- Live Chat
-
The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
-
RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Clinical Trials & Research (Found: 4 Resources)
Resources where you may find research studies and clinical trials
-
ClinicalTrials.gov lists trials that are studying or have studied Ehlers-Danlos syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
-
CRISP is a searchable database of federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies click on the link and enter the disease name in the enter search terms box and click the and button below the box. Then click Submit Query.
-
The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Manifestations of Heritable Disorders of Connective Tissue which may be of interest to you. To find this trial, click on the link above.
-
Orphanet lists clinical trials, research studies, and patient registries enrolling people with this condition. Click on Orphanet to view the list.
- Services (Found: 2 Resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Testing
-
Orphanet lists international laboratories offering diagnostic testing for this condition. Click here and scroll down the page to learn more about the processes of certification, accreditation, and external quality assessment available to these labs. Click on Orphanet to view the list.
- Genetic Services
-
We recommend that you discuss this information and your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
* GeneClinics - A searchable directory of US and international genetics and prenatal diagnosis clinics. To locate genetics clinics in the United States, go to the following link and click on 'Clinic Directory' to find a genetic service close to you.
* ResourceLink - A database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty. Hosted by the National Society of Genetic Counselors.
- NLM Gateway
A tool to search across multiple resources offered on the National Library of Medicine's Website
-
The NLM Gateway allows users to search across multiple resources offered on the National Library of Medicine's Web site. Some of these resources may be duplicated in the list of links above. Click on the link to go to the NLM Gateway, and search by condition name.