From the NIH, this is an excellent resource for scientific information about EDS. (March 7, 2016)
Below I’ve copied a few sections of this document containing many useful links to more information:
Where can I find information about diagnosis or management of Ehlers-Danlos syndrome?
These resources address the diagnosis or management of Ehlers-Danlos syndrome and may include treatment providers.
- Gene Review: Ehlers-Danlos Syndrome, Classic Type
- Gene Review: Ehlers-Danlos Syndrome, Hypermobility Type
- Gene Review: Ehlers-Danlos Syndrome, Kyphoscoliotic Form
- Gene Review: Vascular Ehlers-Danlos Syndrome
- Genetic Testing Registry: Ehlers-Danlos syndrome
- Genetic Testing Registry: Ehlers-Danlos syndrome, musculocontractural type 2
- Genetic Testing Registry: Ehlers-Danlos syndrome, progeroid type, 2
- Genetic Testing Registry: Ehlers-Danlos syndrome, type 7A
- MedlinePlus Encyclopedia: Ehlers-Danlos Syndrome
General information about the diagnosis and management of genetic conditions is available in the Handbook. Read more about genetic testing, particularly the difference between clinical tests and research tests.
To locate a healthcare provider, see How can I find a genetics professional in my area? in the Handbook.
Where can I find additional information about Ehlers-Danlos syndrome?
You may find the following resources about Ehlers-Danlos syndrome helpful. These materials are written for the general public.
- MedlinePlus – Health information (4 links)
- Genetic and Rare Diseases Information Center – Information about genetic conditions and rare diseases (6 links)
- Additional NIH Resources – National Institutes of Health
- National Institute of Arthritis and Musculoskeletal and Skin Diseases: Questions and Answers About Heritable Disorders of Connective Tissue
- Educational resources – Information pages (21 links)
- Patient support – For patients and families (6 links)
You may also be interested in these resources, which are designed for healthcare professionals and researchers.
- Gene Reviews – Clinical summary (4 links)
- Genetic Testing Registry – Repository of genetic test information (23 links)
- ClinicalTrials.gov – Linking patients to medical research
- PubMed – Recent literature
- OMIM – Genetic disorder catalog (18 links)
Links for each of the numerous subtypes of EDS:
Genes related to EDS:
See a list of genes associated with Ehlers-Danlos syndrome.