United Kingdom EDS Support Groups and Charities

Ehlers-Danlos Support UK

Visit www.ehlers-danlos.org.

The Hypermobility Syndromes Association

Visit: hypermobility.org

EDS Affiliate Logo

Mind Body EDS

Mind Body EDS aims to be at the forefront of making a difference every day to the lives of people with Ehlers-Danlos syndromes and their families. We are committed to having a positive impact for everyone affected by Ehlers-Danlos syndromes, to ensure each individual’s health outcome is neither determined nor disadvantaged by their personal means. Our key objectives as an organisation are to provide support in three key areas:

  • EDUCATION: We are about raising awareness and educating the public and medical community about the range of Ehlers-Danlos syndromes and how widespread they are, specifically advocating across the UK’s medical schools. By uniquely focussing on the doctors of tomorrow, we aim to provide better outcomes for EDS patients and in this way differentiate ourselves from other charities.
  • FINANCIAL SUPPORT: We are about financially supporting and contributing to individuals and families who are directly impacted by EDS enabling them to have the option (NHS or private) to access the limited EDS specialists to diagnose, manage and treat the conditions in the UK. Key interventional diagnositics and treatments for some patients are only offered in specialist locations, resulting in substantial travel and accommodation costs for many families, even when treatments are available on the NHS. Fundamentally, we aim to ensure that delay through lack of affordability does not determine a worse outcome for the patient. Mind Body EDS are currently the only charity in the U.K. offering financial grants specifically to EDS patients and their families.
  • RESEARCH: We are about supporting research to find causes, treatments and potential cures of the Ehlers-Danlos syndromes, and improving the quality of life of many patients affected by this genetic condition.

Mind Body EDS is a registered charity in England & Wales. Registered charity no. 1177182

Sussex

Sussex Ehlers-Danlos Syndrome and Hypermobility support community group actively supports members with or without EDS/HSD diagnosis in Sussex. We will run Pilates classes, craft sessions, run informational and professional speaking events, campaign and advocate on accessibility to transport from trains and ferries to aviation. We help support EDS/HSD training for teachers and staff schools and advise on EDS/HSD musculoskeletal guidelines in Sussex NHS. We welcome new members: https://www.facebook.com/SEDSHSD/ and https://www.facebook.com/groups/2083266708592160/

Uckfield

Zebra Warriors of Temple Grove is a safe and warm place of support and comfort. For more information, contact Anita Gallemore at anitaedsgallemore1@gmail.com,




To add your EDS support group or charity, please complete the Support Group Listing Request form. To become an affiliate of the Society, please visit the Global Affiliation Program page.