UNDERSTANDING HYPERMOBILE EHLERS-DANLOS SYNDROME & HYPERMOBILITY SPECTRUM DISORDER
Charities and Non-profits
(listed in alphabetical order):
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 range of printable materials is available from their website (visit: https://www.ehlers-danlos.com/resource-category/printable-brochures-and-materials/).
Ehlers Danlos Support UK
Visit: www.ehlers-danlos.org
A charity supporting people across the United Kingdom with Ehlers-Danlos syndrome and hypermobility spectrum disorder, providing in-person and online support groups, a freephone helpline and a resource packed website, as well as webinars with well known health professionals. EDS UK also produces a magazine twice a year called 'Fragile Links', runs training for the NHS/private sector and helps to fund research. Membership to EDS UK is free of charge.
A range of publications is available from their online shop (visit: https://shop.ehlers-danlos.org)
EDS Wellness
Visit: edswellness.org
A nonprofit organisation providing virtual and in-person patient and continuing medical education, to facilitate 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 charity supporting everyone with symptomatic hypermobility – whatever the cause. With a holistic, solution-focused approach to living well with a hypermobility syndrome, they provide management-focused patient support groups, and educational programmes, information, and advice to hypermobile people and their wider support network, including health and social care professionals.
A range of publications is available from their online shop (visit: https://www.hypermobility.org/shop)
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.
A range of printable materials is available from their website (visit: https://www.mastcellaction.org/resources)
PoTS UK
PoTS UK was founded by a group of healthcare professionals with postural orthostatic tachycardia syndrome (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.
A range of printable materials is available from their website (visit: https://www.potsuk.org/about-pots/download-pots-leaflets/)
SEDSConnective
Visit: https://www.sedsconnective.org
SEDSConnective is a global charity working to improve and actively support the lives of those affected by neurodivergence (primarily autism, ADHD, dyspraxia and Tourette's syndrome) and symptomatic hypermobility (primarily Ehlers-Danlos syndromes, hypermobility spectrum disorders, joint hypermobility syndrome) and associated conditions, They work with patients, families and carers, in health, education, social care, employment and transport accessibility, and collaborate with professionals, researchers, organisations and other charities, in mutual reciprocity.
A range of printable materials is available from their website (visit: https://www.sedsconnective.org/resources)