Charities and Non-profits 

(listed in alphabetical order):

Please note: There are no formal listing criteria, and no warranties, guarantees (express or implied) are made as to the quality of care given or any medical advice provided by those in this listing. 

 

Ehlers-Danlos Society

Visit: www.ehlers-danlos.com

A global community of patients, caregivers, health care professionals, and supporters. 'Research is at the centre of what we do, so that one day we will have a cure.' The Society support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.

A wide range of printable materials including educational leaflets and posters.

Ehlers Danlos Support UK 

Visit: www.ehlers-danlos.org

A wide range of printable information covering Ehlers-Danlos syndrome

Publications include the following:

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  • Pregnancy & Childbirth in Ehlers-Danlos Syndrome

  • Difficulties in School/College for Young People with EDS

  • Learning to be Different (written for 4-7 year olds)

  • EDS Medical Passport

EDS Wellness

Visit: edswellness.org

A nonprofit organisation providing virtual and in-person patient and continuing medical education, to facilite proper diagnosis for ALL hypermobility disorders and related conditions, and to develop and implement research-based solutions for patients and healthcare providers. 

Hypermobility Syndromes Association 

Visit: hypermobility.org

A wide range of printable information covering Ehlers-Danlos syndrome,

hypermobility spectrum disorder, Marfan syndrome, Osteogenesis imperfecta and Stickler syndrome is available from the Hypermobility Syndromes Association website.

A range of purchasable publications are available from their online shop (visit: www.hypermobilityshop.org)

Their range of publications includes:

 

  • Living well with a heritable disorder of connective tissue

  • An Educator’s Guide to the hypermobile student

  • Have you, or someone you know, been diagnosed with one of the hypermobility syndromes

  • Persistent fatigue and heritable disorders of connective tissue.

Mast Cell Action

https://www.mastcellaction.org/

Mast Cell Action offer support to the mast cell disease community, their families, doctors and researchers.

They raise awareness of Mast Cell Activation Syndrome and strive for better diagnostics and treatment.

PoTS UK

https://www.potsuk.org/

PoTS UK was founded by a group of healthcare professionals with PoTS who recognised the need to increase awareness of this condition. They work with patients, family, healthcare professionals and other charities in the UK and abroad, and advocate for our members by seeking better NHS services, more research, and targeted treatments for people with PoTS.

Sussex EDS

Visit: https://www.sussexeds.com

A Sussex-wide voluntary community group actively supporting people with EDS/HSD

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