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Rarest Of The Rare: Two Women Among The Eleven People Reported Worldwide With Rare Genetic Disorder, Myopathic Ehlers-Danlos Syndrome, Seek Awareness For ‘Invisible Illness’

Oklahoma mother and daughter receive rare disease diagnosis from NIH only to find they are alone with their specific genetic mutation of painful and potentially disabling form of Ehlers-Danlos syndrome. BALTIMORE, MD USA — When Oklahoma teenager Whitney Silver began experiencing severe joint dislocations and chronic pain in 2013, it only took three months for […]
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Ehlers-Danlos Society Receives Transformational Gift to Accelerate Genomic Research into Hypermobile EDS

Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder. February 12, 2018 – BALTIMORE, MD – The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an […]
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