PART SIX: MISCELLANEOUS

13.0 International Consortium on Ehlers-Danlos Syndromes and Related Disorders

The International Consortium on Ehlers-Danlos Syndromes and Related Disorders, ‘the Consortium’, was created following the 2017 diagnostic criteria and management and care guidelines.

The Consortium is an independent group of medical professionals and patient experts committed to progress, research, and collaboration in the field, to work on the many challenges and research questions faced by families, clinicians, and social agencies.

The clinicians, scientists, and lay experts are organised into committees and working groups based on medical specialty and research interests and coordinated by the Steering Committee.

The Consortium’s administrative and event-planning needs are facilitated by The Ehlers-Danlos Society, but all work and opinions are independent and come solely from the consortium members.

The Ehlers-Danlos Society hosts the Consortium’s International Symposium every two years.

14.0 Summary

EDS is generally an inherited condition which has variable impacts on the individual throughout their lifetime. These range from hypermobility and pain to disability and, in some sub-types, even premature death.

Although currently incurable, there are a number of interventions that can help to alleviate the signs and symptoms of EDS such as physical therapy and exercise. However, one must ensure they seek the advice and guidance of professionals with the skills and knowledge to appropriately treat and manage their EDS.

Ultimately, the goal of the various professionals is to give the individual the knowledge and tools to empower them to manage their impairments and pain long-term through active treatments so they can achieve a decent quality of life.

15.0 Useful Publications

  • American Journal of Medical Genetics. Volume 175, Issue 1. Special Issue: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes. March 2017.

16.0 Useful Links

  • The Ehlers-Danlos Society (International): https://www.ehlers-danlos.com/.
  • Ehlers-Danlos Support UK: https://www.ehlers-danlos.org/.
  • Hypermobility Syndromes Association (HMSA): http://hypermobility.org/.
  • Annabelles Challenge (provides support for those with vascular EDS): https://www.annabelleschallenge.org/.
  • Mast Cells Action: https://www.mastcellaction.org/.
  • POTS UK: http://www.potsuk.org/.
  • Dysautonomia International: http://www.dysautonomiainternational.org/.
  • Retrain Pain: https://www.retrainpain.org/english.
  • Pain Toolkit: https://www.paintoolkit.org/.
  • Ehlers-Danlos National Foundation: http://www.ednf.org.
  • National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/.
  • University of Washington, Dept. of Orthopaedics and Sports Medicine: http://www.orthop.washington.edu/.
  • Ehlers-Danlos Syndrome Network C.A.R.E.S.: http://www.ehlersdanlosnetwork.org/.
  • Arthritis Foundation: http://www.arthritis.org/.
  • EDS-H: https://www.edhs.info/home.

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