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EDS: Saving and Improving Lives of Those Affected by Ehlers-Danlos Syndromes
The Ehlers-Danlos Society (EDS) is a global community that aims to save and improve the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders, and related conditions. EDS is a group of genetic connective tissue disorders that affect the body's collagen, which provides strength and elasticity to various tissues in the body. The society was founded in 1985 by Nancy Hanna Rogowski, who herself had EDS.
The society has grown over the years to become a leading organization dedicated to providing support, education, research funding, and advocacy for people with EDS. It has members from all over the world who are patients, caregivers, health care professionals or supporters.
One of the primary goals of EDS is to raise awareness about these conditions among healthcare professionals so that they can diagnose them early on. Many people with EDS go undiagnosed for years because their symptoms are often mistaken for other conditions such as fibromyalgia or chronic fatigue syndrome.
To achieve this goal, EDS organizes conferences and workshops where healthcare professionals can learn more about these conditions from experts in the field. The society also provides educational resources such as brochures and videos that explain what EDS is and how it affects people.
Another important aspect of EDS's work is supporting research into these conditions. The society funds research projects aimed at understanding more about these disorders' causes so that better treatments can be developed. They also collaborate with researchers worldwide on various studies related to connective tissue disorders.
In addition to raising awareness among healthcare professionals and supporting research into these conditions' causes, another critical aspect of EDS's work is providing support for patients living with them. Living with a rare condition like EDS can be challenging both physically and emotionally; therefore having access to support groups where individuals share their experiences can be invaluable.
EDS offers online forums where members can connect with others who have similar experiences living with these conditions. They also organize local support groups worldwide where members meet regularly face-to-face or virtually through video conferencing platforms like Zoom or Skype.
Finally yet importantly, advocacy plays an essential role in achieving change at both national levels regarding policies affecting those living with rare diseases like EDs globally while ensuring access to quality care services across different regions worldwide.
In conclusion,
The Ehlers-Danlos Society (EDS) plays an essential role in saving lives by raising awareness among healthcare providers about this group of genetic connective tissue disorders affecting many individuals globally while offering emotional support through its online forums & local groups worldwide alongside funding research projects aimed at developing better treatments for those affected by EDs & advocating policy changes towards improving quality care services across different regions globally!
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