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Excluding pain, movement problems and spontaneous bleeding, people diagnosed with hypermobile Ehlers–Danlos syndrome (hEDS) and those with hypermobile spectrum disorder (HSD) have comparable disease severity and extra-articular (not affecting the joints) symptoms, according to a study. A physical therapy program also eased symptoms in a similar way for…
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Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
The Ehlers-Danlos Society, in collaboration with the EDS and HSD International Consortium Pain Working Group, recently released a statement regarding opioid use by people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). EDS is a group of genetic disorders that specifically affect the connective tissue…
Columnist Karen Del Vecchio admits the fear of being injured with Ehlers-Danlos syndrome is always present, but she won’t let that stop her.
Check out Ehlers-Danlos News’ collection of Health Insights, where you can find more information and guidance.
Click the link below to find all the latest news related to Ehlers-Danlos syndrome.
Becoming educated and informed about Ehlers-Danlos syndrome is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Ehlers-Danlos syndrome yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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