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Scientists finally may have discovered a gene mutation that associates with hypermobile Ehlers-Danlos syndrome (hEDS) — and their findings, eagerly awaited by the hEDS patient community, are expected to be written up within the next six months, they said. While known mutations are linked with various EDS subtypes, hEDS cases…
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AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
Some people diagnosed with periodontal Ehlers-Danlos syndrome (pEDS) may also have vascular abnormalities, a case series highlights. Although rare, these cases add to previous reports of vascular complications in pEDS patients and support the need for comprehensive vascular assessment in this patient population. This information will likely help to…
Summer means an increase in seasonal allergies for columnist Karen Del Vecchio. Unfortunately, allergies don’t help her EDS symptoms.
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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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