Resources

We’ve collated useful documents, videos, support and more for anyone interested in, working with, or suffering from hEDS or HSD.

  • Publications
    Publications

    Parents’ experiences of children’s health care for EDS/HSD in the UK

    Parents’ Experiences of Children’s Health Care for Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

    This is an Accepted Manuscript of an article published by Taylor & Francis in Children’s Health Care on 25th September 2021, available online: http://www.tandfonline.com/10.1080/02739615.2021.1960165

  • Websites
    Websites

    STARS – Syncope Trust And Reflex anoxic Seizures

    Ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional.

  • Publications
    Publications

    Pathogenesis of EDS/HSD paper

    The Role of Cell Adhesion and Cytoskeleton Dynamics in the Pathogenesis of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

  • Publications
    Publications

    Beighton Score Review Paper

    The Beighton Score as a measure of generalised joint hypermobility

  • Websites
    Websites

    British Heart Foundation

    The BHF is a charity that funds vital research into heart disease, stroke, and vascular dementia, and their risk factors.

  • Websites
    Websites

    PoTS UK

    A charity for people affected by Postural Tachycardia Syndrome (PoTS)

  • Websites
    Websites

    RCM i-learn module

    The Royal College of Midwives (RCM) i-learn module for hEDS/HSD & related disorders in childbearing

  • Publications
    Publications

    EDS maternity interview research publication

    Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

  • Websites
    Websites

    RCGP toolkit podcast

    Emma Reinhold, RCGP Clinical Champion for Ehlers-Danlos syndromes, is joined by RCGP Chair Professor Helen Stokes-Lampard.

  • Tools
    Tools

    Maternity tool

    Shared decision making maternity tool for pregnancy notes

  • Videos
    Videos

    HMSA & EDS Support UK Management and Wellbeing Patient Conference

    Dr Emma Reinhold at the HMSA & EDS Support UK Management and Wellbeing Patient Conference 2017

  • Videos
    Videos

    EDS Maternity – Pint Of Science film

    Public engagement event presenting what we know so far about maternity and hypermobile Ehlers-danlos Syndrome and related diagnoses.

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