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  • What is EDS?
    • Types of EDS
      • Hypermobile EDS and hypermobility spectrum disorders
      • Classical EDS
      • Vascular EDS
      • All types
    • Diagnosis
      • How to get assessed for hEDS or HSD
      • Genetic testing for rare types of EDS
      • …more on diagnosis
    • Living with EDS
      • Physiotherapy and self-management
      • Pain
      • Fatigue
      • Surgery
      • Self management
    • Conditions linked to EDS
      • Brain and spine
      • Digestive disorders
      • Postural tachycardia syndrome (PoTS)
      • …more conditions linked to EDS
    • Children
      • Pregnancy
      • Your child and the Ehlers-Danlos syndromes
      • Gastrointestinal problems in children with Ehlers-Danlos syndrome
      • …more on children
    • Healthcare professionals
      • Physical therapy for hypermobility
      • A midwife’s guide to pregnancy, birth, feeding and EDS
      • …more for healthcare professionals
    • Awareness presentations
      • General what is EDS presentation
      • What is EDS for primary schools
      • What is EDS for secondary schools
    • Stories
      • Education
      • Fundraising
      • Management
      • Mental Health
      • Physiotherapy
      • Pain
      • Work
    • Webinars
      • Webinar player
    • FAQ’s
      • Frequently asked questions about EDS and HSD
  • Support
    • Support volunteers
      • Men’s Coordinator
      • Parents’ Coordinator – Mel
      • Elders’ Coordinator – Caz
    • Benefits and disabilities
      • Blue badges
      • Employment advice
      • Guides to help with benefits claims
      • Information on disability
    • Support Groups
      • Central and Greater London
      • East Midlands
      • East of England
      • Kent
      • … more regions
    • Child protection and EDS
      • Parents accused
      • Parent protecting children
    • Adviceline
      • Contact our adviceline
  • How you can help
    • Make a donation
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        • May awareness month
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        • Recycle your used stamps
        • E-cards
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        • Running & walking events
        • Cycling events
        • Adrenaline events
      • Virtual fundraising
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  • About
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      • Why the zebra?
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    • #EnoughIsEnough
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    • What is EDS?
      • Types of EDS
        • Hypermobile EDS and hypermobility spectrum disorders
        • Classical EDS
        • Vascular EDS
        • All types
      • Diagnosis
        • How to get assessed for hEDS or HSD
        • Genetic testing for rare types of EDS
        • …more on diagnosis
      • Living with EDS
        • Physiotherapy and self-management
        • Pain
        • Fatigue
        • Surgery
        • Self management
      • Conditions linked to EDS
        • Brain and spine
        • Digestive disorders
        • Postural tachycardia syndrome (PoTS)
        • …more conditions linked to EDS
      • Children
        • Pregnancy
        • Your child and the Ehlers-Danlos syndromes
        • Gastrointestinal problems in children with Ehlers-Danlos syndrome
        • …more on children
      • Healthcare professionals
        • Physical therapy for hypermobility
        • A midwife’s guide to pregnancy, birth, feeding and EDS
        • …more for healthcare professionals
      • Awareness presentations
        • General what is EDS presentation
        • What is EDS for primary schools
        • What is EDS for secondary schools
      • Stories
        • Education
        • Fundraising
        • Management
        • Mental Health
        • Physiotherapy
        • Pain
        • Work
      • Webinars
        • Webinar player
      • FAQ’s
        • Frequently asked questions about EDS and HSD
    • Support
      • Support volunteers
        • Men’s Coordinator
        • Parents’ Coordinator – Mel
        • Elders’ Coordinator – Caz
      • Benefits and disabilities
        • Blue badges
        • Employment advice
        • Guides to help with benefits claims
        • Information on disability
      • Support Groups
        • Central and Greater London
        • East Midlands
        • East of England
        • Kent
        • … more regions
      • Child protection and EDS
        • Parents accused
        • Parent protecting children
      • Adviceline
        • Contact our adviceline
    • How you can help
      • Make a donation
        • Donate today
        • Leave a lasting legacy
        • Give in memory
      • Raise money
        • In your community
          • May awareness month
          • Collection boxes
          • Recycle your used stamps
          • E-cards
        • Take part in a fundraising event
          • Running & walking events
          • Cycling events
          • Adrenaline events
        • Virtual fundraising
      • Volunteer your time
        • Become an Area Coordinator
        • Become a Fundraising Volunteer
        • Other types of volunteering
      • Become a member
        • Join today
      • Become a partner
        • Green people
        • Strata Miniatures
        • UK Railtours
    • News
    • Research
    • Professionals
      • Toolkits for professionals
        • Toolkit for GPs
        • Toolkit for schools
    • About
      • Our vision and mission and theory of change
        • Our values
        • Our research position
        • Why the zebra?
        • Ambassadors
        • Our patron
        • The Information Standard
        • EDS UK Community Champion Awards
      • Contact us
        • Staff team
        • Trustees
        • Medical Advisory Panel
        • Vacancies
        • Send us a message
      • Policies
        • Complaints policy
        • Delivery and returns
        • Membership policy
        • Privacy policy
        • Fundraising policy and ethical framework
        • Terms and conditions
    • Campaigns
      • #EnoughIsEnough
    • Shop
    • Membership Account
      • Your Profile

    Data protection policy

    Our data protection policy can be downloaded by clicking here..

    • Complaints policy

      Effective: 1 March 2025 The Ehlers-Danlos Support UK (EDS UK) aims to maintain high standards in all of its work but we recognise that we don’t always get it exactly right, despite our best intentions. We are committed to establishing and maintaining good relations with all volunteers, supporters, donors, partners, and members of the public […]

    • Delivery and returns

      1. Where do you deliver to? We are currently only able to deliver shop orders to the UK and Republic of Ireland. Any orders placed for delivery outside these areas will be refunded. Please email us if you wish to arrange international delivery (info@ehlers-danlos.org).   2. What are your delivery charges? All our items are […]

    • Fundraising policy and ethical framework

      The Ehlers-Danlos Support UK (EDS UK) fundraises to deliver on its mission to offer support to anybody touched by any of the Ehlers-Danlos syndromes. We have signed up to the Fundraising Regulator’s Code of Fundraising Practice  and all our fundraising will be open, honest, fair and legal. This document sets out our policy on ethical […]

    • Membership policy

      1.0 Membership schemes and benefits The Ehlers-Danlos Support UK (EDS UK) has two membership schemes available to anybody aged 18 or over touched by EDS (free membership and plus Fragile Links). The benefits of each scheme are outlined on the membership section of the website. EDS UK reserves the right to amend or cancel any […]

    • Online support groups policy

      This policy will be updated shortly.

    • Privacy Policy

      1.0 What is this Privacy Policy for? This privacy policy is for the domain ehlers-danlos.org and served by The Ehlers-Danlos Support UK and governs the privacy of its users who choose to use it. The policy sets out the different areas where user privacy is concerned and outlines the obligations and requirements of the users, […]

    • Social media marketing

      Targeting our digital and social media marketing On occasion, we will use the information you provide us to target our digital and social media advertising effectively. This could include securely providing contact details such as your name and email address to digital advertising networks or social media companies such as Facebook, Google and Twitter. For […]

    • Terms and conditions

      These terms and conditions apply to the use of this Website and by accessing this Website and/or placing an order you agree to be bound by these terms and conditions, our delivery and returns policy, membership policy and our privacy policy. If you do not agree to be bound by these terms and conditions you […]

    • Complaints policy

      Effective: 1 March 2025 The Ehlers-Danlos Support UK (EDS UK) aims to maintain high standards in all of its work but we recognise that we don’t always get it exactly right, despite our best intentions. We are committed to establishing and maintaining good relations with all volunteers, supporters, donors, partners, and members of the public […]

    • Delivery and returns

      1. Where do you deliver to? We are currently only able to deliver shop orders to the UK and Republic of Ireland. Any orders placed for delivery outside these areas will be refunded. Please email us if you wish to arrange international delivery (info@ehlers-danlos.org).   2. What are your delivery charges? All our items are […]

    • Fundraising policy and ethical framework

      The Ehlers-Danlos Support UK (EDS UK) fundraises to deliver on its mission to offer support to anybody touched by any of the Ehlers-Danlos syndromes. We have signed up to the Fundraising Regulator’s Code of Fundraising Practice  and all our fundraising will be open, honest, fair and legal. This document sets out our policy on ethical […]

    • Membership policy

      1.0 Membership schemes and benefits The Ehlers-Danlos Support UK (EDS UK) has two membership schemes available to anybody aged 18 or over touched by EDS (free membership and plus Fragile Links). The benefits of each scheme are outlined on the membership section of the website. EDS UK reserves the right to amend or cancel any […]

    • Online support groups policy

      This policy will be updated shortly.

    • Privacy Policy

      1.0 What is this Privacy Policy for? This privacy policy is for the domain ehlers-danlos.org and served by The Ehlers-Danlos Support UK and governs the privacy of its users who choose to use it. The policy sets out the different areas where user privacy is concerned and outlines the obligations and requirements of the users, […]

    • Social media marketing

      Targeting our digital and social media marketing On occasion, we will use the information you provide us to target our digital and social media advertising effectively. This could include securely providing contact details such as your name and email address to digital advertising networks or social media companies such as Facebook, Google and Twitter. For […]

    • Terms and conditions

      These terms and conditions apply to the use of this Website and by accessing this Website and/or placing an order you agree to be bound by these terms and conditions, our delivery and returns policy, membership policy and our privacy policy. If you do not agree to be bound by these terms and conditions you […]

    How can we help?

    • I need support
    • Where is my nearest support group?
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    Keep in touch

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    Contact us

    The Ehlers-Danlos Support UK

    International House

    66 Lavender Hill

    London

    SW11 5RQ

    T: 0800 246 1391

    Adviceline: 0800 907 8518

    Send us a message
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    © Copyright 2017 The Ehlers-Danlos Support UK

    Registered Address: International House, 66 Lavender Hill, London, SW11 5RQ
    The Ehlers-Danlos Support UK is a Charity registered in England and Wales (1157027) and Scotland (SC046712)
    Registered Company No. 8924646.

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