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Tagged genetic-disorder

Becoming ZebraStrong: Ehlers-Danlos Society Launches International Patient Empowerment and EDS Awareness Tour

Press Release Oct 9, 2018

Becoming ZebraStrong: Ehlers-Danlos Society Launches International Patient Empowerment and EDS Awareness Tour

Patient Advocate and International Executive Director Lara Bloom to screen inspiring documentary, "Issues with my Tissues," to empower patients, families, and raise awareness for EDS and associated disorders Read More

Ehlers-Danlos Society Receives Transformational Gift for Genomic Research Into Rare Disorder, HyperMobile EDS

Press Release Feb 13, 2018

Ehlers-Danlos Society Receives Transformational Gift for Genomic Research Into Rare Disorder, 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 painful, disabling connective tissue disorder Read More

June 12 - 18 2016 Is Rare Chromosome Disorder Awareness Week

Press Release Jun 13, 2016

June 12 - 18 2016 Is Rare Chromosome Disorder Awareness Week

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