UNDERSTANDING HYPERMOBILE EHLERS-DANLOS SYNDROME & HYPERMOBILITY SPECTRUM DISORDER
Useful Links
Please Visit Us on Our Facebook Page:
Understand Ehlers-Danlos Hypermobility Type & Joint Hypermobility Syndrome at:
Information and Support
Hypermobility Syndromes Association - Details of current research, FAQ, discussion boards and a section for kids and teens. (Approved by Information Standards, supported by the NHS UK)
Ehlers-Danlos National Foundation (USA)
Inspire Support Community
www.inspire.com/groups/ehler-danlos-national-foundation
EDS Support UK
POTs UK (Postural Orthostatic Tachycardia) (Approved by Information Standards, supported by the NHS UK)
The Scoliosis Assoication (Approved by Information Standards, supported by the NHS UK)
Pain UK - The national umberalla group for pain charities
Action on Disability and Work UK (bring employees and businesses together with advice and support to facilitate a successful pathway that works perfectly for everyone).
'Guide to Hypermobility Syndrome' (dedicated to my hypermobile patients, from whom I have learned so much. I’ve come to understand hypermobility syndrome, but you’ve lived it. By Dr Alan Pocinki
www.cfids.org/pdf/joint-hypermobility-guide.pdf
Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations' by Marco Castori, Medical Genetics Dept. of Molecular Medicine
www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326
SCOPE - exists to make this country a better place for disabled people and their families
Help for Carers
The Princess Royal Trust for Carers
Unit 14 Bourne Court
Southend Road
Woodford Green
Essex
IB8 8HD
England tel: 0844 800 4361 Scotland tel: 0141 221 5066 Wales tel: 02920 221788
Carer’s Allowance Unit
Tel: 0845 608 4321 Email
10 Regent Place
Rugby
CV21 2PN
Tel: 0845 450 0350
