Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders
Abstract
A subgroup of patients with hypermobile Ehlers–Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), and related heritable connective tissue disorders develop...
Managing Patients With Hypermobility Disorders: They’ve Seen You, but Have You Seen Them?
Mintken, Paul E.; Dommerholt, Jan; Francomano, Clair A.
Abstract
SYNOPSIS: Patients with hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) frequently present to...
Has anyone heard of the Collagen Advocacy Network? It seems to be a new group (first post on Instagram was on March 12) that focuses on the stories and needs of people with genetic EDS types. Their Instagram bio is “Advocacy & community for people with rare and ultra rare Ehlers Danlos...
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