The Ehlers-Danlos Support Uk

The Ehlers-Danlos Support Uk company information, Employees & Contact Information

EDS UK was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes. We aim to help them live a full, active and positive life. Over 25 years later, we remain the only UK based charity that exclusively represents and supports people with all types of EDS. We run regular events and conferences to bring our community together, and produce literature and merchandise to increase understanding and improve management of the condition. We have over 50 support groups around the country to provide our members with a local peer support network and we hope to expand this and create more groups in the coming months. We run a freephone helpline which is available to everyone, including people with EDS as well as friends, families, carers, and healthcare professionals. EDS UK strive to educate the medical community, promote continuity of care, improve accurate diagnosis and provide information on specialist treatment and management of the condition.. We also fund vital research to further understand EDS. We are a charity and rely on fundraising and donations to continue our work. Your support is greatly appreciated and is essential to ensure we can continue to make our invisible, visible. Our vision is that nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care. We work to improve the quality of life for people living with EDS, raising awareness and providing support as part of a growing community. We have four areas of focus guiding all of our work: Education and awareness Support for those affected by EDS Better knowledge through research Organisational capability – making sure we are a high performing, sustainable organisation While our focus is EDS, we welcome anyone whose symptoms cross over with it who can be helped by what we do.
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Efficacy of Irbesartan in Celiprolol-Treated Patients With Vascular Ehlers-Danlos Syndrome - American Heart Association Journals

Efficacy of Irbesartan in Celiprolol-Treated Patients With Vascular Ehlers-Danlos Syndrome American Heart Association Journals

Understanding Hypermobility and Ehlers Danlos Syndrome - TulsaKids Magazine

Understanding Hypermobility and Ehlers Danlos Syndrome TulsaKids Magazine

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome - Pain News Network

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome Pain News Network

JAY LLOYD Obituary (2025) - Tindle Surrey and Hants - Legacy obituary

JAY LLOYD Obituary (2025) - Tindle Surrey and Hants Legacy obituary

Estimates of the excess cost burden of Ehlers-Danlos syndromes: a United States MarketScan® claims database analysis - Frontiers

Estimates of the excess cost burden of Ehlers-Danlos syndromes: a United States MarketScan® claims database analysis Frontiers

Vascular Ehlers-Danlos syndrome in children: evaluating the importance of diagnosis and follow-up during childhood - Nature

Vascular Ehlers-Danlos syndrome in children: evaluating the importance of diagnosis and follow-up during childhood Nature

Ehlers-Danlos syndrome: A common but overlooked cause of chronic pain - Mayo Clinic Press

Ehlers-Danlos syndrome: A common but overlooked cause of chronic pain Mayo Clinic Press

Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review - Frontiers

Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review Frontiers

Vascular Ehlers-Danlos Syndrome: A Comprehensive Natural History Study in a Dutch National Cohort of 142 Patients - American Heart Association Journals

Vascular Ehlers-Danlos Syndrome: A Comprehensive Natural History Study in a Dutch National Cohort of 142 Patients American Heart Association Journals

Heterozygous THBS2 pathogenic variant causes Ehlers–Danlos syndrome with prominent vascular features in humans and mice | European Journal of Human Genetics - Nature

Heterozygous THBS2 pathogenic variant causes Ehlers–Danlos syndrome with prominent vascular features in humans and mice | European Journal of Human Genetics Nature

The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships - Frontiers

The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships Frontiers

The Ehlers-Danlos syndromes - Nature

The Ehlers-Danlos syndromes Nature

Animal Models of Ehlers–Danlos Syndromes: Phenotype, Pathogenesis, and Translational Potential - Frontiers

Animal Models of Ehlers–Danlos Syndromes: Phenotype, Pathogenesis, and Translational Potential Frontiers

A case of massive hematoma: reflections on hypermobile Ehlers-Danlos syndrome - Frontiers

A case of massive hematoma: reflections on hypermobile Ehlers-Danlos syndrome Frontiers

Uncommon association between vascular Ehlers–Danlos syndrome and ocular complications - Frontiers

Uncommon association between vascular Ehlers–Danlos syndrome and ocular complications Frontiers

Assessment of a novel Ehlers-Danlos syndromes disability index - Frontiers

Assessment of a novel Ehlers-Danlos syndromes disability index Frontiers

High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities - Frontiers

High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities Frontiers

Cardiac defects of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: a retrospective cohort study - Frontiers

Cardiac defects of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: a retrospective cohort study Frontiers

Ehlers-Danlos syndromes and their manifestations in the visual system - Frontiers

Ehlers-Danlos syndromes and their manifestations in the visual system Frontiers

Case report: A novel COL3A1 variant in a Colombian patient with isolated cerebrovascular involvement in vascular Ehlers–Danlos syndrome - Frontiers

Case report: A novel COL3A1 variant in a Colombian patient with isolated cerebrovascular involvement in vascular Ehlers–Danlos syndrome Frontiers

Laryngological Symptomatology in Patients with Ehlers–Danlos Syndrome - Sharma - 2024 - The Laryngoscope - Wiley Online Library

Laryngological Symptomatology in Patients with Ehlers–Danlos Syndrome - Sharma - 2024 - The Laryngoscope Wiley Online Library

Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort - Frontiers

Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort Frontiers

Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study - Frontiers

Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study Frontiers

Spontaneous Cervical Artery Dissection in Vascular Ehlers-Danlos Syndrome: - American Heart Association Journals

Spontaneous Cervical Artery Dissection in Vascular Ehlers-Danlos Syndrome: American Heart Association Journals

Adjustment to disease and quality of life in people with vascular Ehlers-Danlos and Loeys-Dietz syndromes: A mixed-method study - Frontiers

Adjustment to disease and quality of life in people with vascular Ehlers-Danlos and Loeys-Dietz syndromes: A mixed-method study Frontiers

Ehlers-Danlos Syndrome, Hypermobility Type: Impact of Somatosensory Orthoses on Postural Control (A Pilot Study) - Frontiers

Ehlers-Danlos Syndrome, Hypermobility Type: Impact of Somatosensory Orthoses on Postural Control (A Pilot Study) Frontiers

High rate of dyspareunia and probable vulvodynia in Ehlers–Danlos syndromes and hypermobility spectrum disorders: An online survey - Wiley Online Library

High rate of dyspareunia and probable vulvodynia in Ehlers–Danlos syndromes and hypermobility spectrum disorders: An online survey Wiley Online Library

Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes - Neurology® Journals

Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes Neurology® Journals

What Ehlers-Danlos syndrome can teach us about autism - The Transmitter

What Ehlers-Danlos syndrome can teach us about autism The Transmitter

Case report: further delineation of AEBP1-related Ehlers–Danlos Syndrome (classical-like EDS type 2) in an additional patient and comprehensive clinical and molecular review of the literature - Frontiers

Case report: further delineation of AEBP1-related Ehlers–Danlos Syndrome (classical-like EDS type 2) in an additional patient and comprehensive clinical and molecular review of the literature Frontiers

Mechanobiology in the Comorbidities of Ehlers Danlos Syndrome - Frontiers

Mechanobiology in the Comorbidities of Ehlers Danlos Syndrome Frontiers

Accuracy of Clinical Diagnostic Criteria for Patients With Vascular Ehlers-Danlos Syndrome in a Tertiary Referral Centre - American Heart Association Journals

Accuracy of Clinical Diagnostic Criteria for Patients With Vascular Ehlers-Danlos Syndrome in a Tertiary Referral Centre American Heart Association Journals

C1R Mutations Trigger Constitutive Complement 1 Activation in Periodontal Ehlers-Danlos Syndrome - Frontiers

C1R Mutations Trigger Constitutive Complement 1 Activation in Periodontal Ehlers-Danlos Syndrome Frontiers

Features of Vascular Ehlers-Danlos Syndrome Among Biobank Participants Harboring Predicted High-Risk COL3A1 Genotypes | Circulation: Genomic and Precision Medicine - American Heart Association Journals

Features of Vascular Ehlers-Danlos Syndrome Among Biobank Participants Harboring Predicted High-Risk COL3A1 Genotypes | Circulation: Genomic and Precision Medicine American Heart Association Journals

Features of Vascular Ehlers-Danlos Syndrome Among Biobank Participants Harboring Predicted High-Risk COL3A1 Genotypes | Circulation: Genomic and Precision Medicine - American Heart Association Journals

Features of Vascular Ehlers-Danlos Syndrome Among Biobank Participants Harboring Predicted High-Risk COL3A1 Genotypes | Circulation: Genomic and Precision Medicine American Heart Association Journals

Therapeutic difficulties in a patient with Ehlers-Danlos syndrome and numerous symptomatic premature ventricular contractions—case report and literature review - Frontiers

Therapeutic difficulties in a patient with Ehlers-Danlos syndrome and numerous symptomatic premature ventricular contractions—case report and literature review Frontiers

Ehlers-Danlos syndrome – what are the dental implications? - Dentistry UK

Ehlers-Danlos syndrome – what are the dental implications? Dentistry UK

Can folate ease symptoms of Ehlers-Danlos syndrome? - futurity.org

Can folate ease symptoms of Ehlers-Danlos syndrome? futurity.org

Case Report: Hybrid approach as a Rescue Treatment in a patient with vascular Ehlers–Danlos Syndrome - Frontiers

Case Report: Hybrid approach as a Rescue Treatment in a patient with vascular Ehlers–Danlos Syndrome Frontiers

Therapeutic difficulties in a patient with Ehlers-Danlos syndrome and numerous symptomatic premature ventricular contractions -case report and literature review - Frontiers

Therapeutic difficulties in a patient with Ehlers-Danlos syndrome and numerous symptomatic premature ventricular contractions -case report and literature review Frontiers

Neuraxial biomechanics, fluid dynamics, and myodural regulation: rethinking management of hypermobility and CNS disorders - Frontiers

Neuraxial biomechanics, fluid dynamics, and myodural regulation: rethinking management of hypermobility and CNS disorders Frontiers

Ehlers–Danlos Syndrome: Not Just Joint Hypermobility - Bregant - 2018 - Case Reports in Medicine - Wiley Online Library

Ehlers–Danlos Syndrome: Not Just Joint Hypermobility - Bregant - 2018 - Case Reports in Medicine Wiley Online Library

A case of urinary calculus in a patient with Ehlers‐Danlos syndrome - Owa - 2023 - IJU Case Reports - Wiley Online Library

A case of urinary calculus in a patient with Ehlers‐Danlos syndrome - Owa - 2023 - IJU Case Reports Wiley Online Library

Myopathy Associated With Dermatan Sulfate-Deficient Decorin and Myostatin in Musculocontractural Ehlers-Danlos Syndrome: A Mouse Model Investigation - Frontiers

Myopathy Associated With Dermatan Sulfate-Deficient Decorin and Myostatin in Musculocontractural Ehlers-Danlos Syndrome: A Mouse Model Investigation Frontiers

Delineation of musculocontractural Ehlers–Danlos Syndrome caused by dermatan sulfate epimerase deficiency - Wiley Online Library

Delineation of musculocontractural Ehlers–Danlos Syndrome caused by dermatan sulfate epimerase deficiency Wiley Online Library

Two Different Missense C1S Mutations, Associated to Periodontal Ehlers-Danlos Syndrome, Lead to Identical Molecular Outcomes - Frontiers

Two Different Missense C1S Mutations, Associated to Periodontal Ehlers-Danlos Syndrome, Lead to Identical Molecular Outcomes Frontiers

Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations - Wiley Online Library

Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations Wiley Online Library

Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s) - Orphanet Journal of Rare Diseases

Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s) Orphanet Journal of Rare Diseases

A message from our Chair during Ehlers-Danlos Awareness Month - genomicsengland.co.uk

A message from our Chair during Ehlers-Danlos Awareness Month genomicsengland.co.uk

Promotion of vesicular zinc efflux by ZIP13 and its implications for spondylocheiro dysplastic Ehlers–Danlos syndrome - PNAS

Promotion of vesicular zinc efflux by ZIP13 and its implications for spondylocheiro dysplastic Ehlers–Danlos syndrome PNAS

Ehlers–Danlos syndrome type VIII is clinically heterogeneous disorder associated primarily with periodontal disease, and variable connective tissue features - Nature

Ehlers–Danlos syndrome type VIII is clinically heterogeneous disorder associated primarily with periodontal disease, and variable connective tissue features Nature

Vascular Ehlers–Danlos Syndrome in siblings with biallelic COL3A1 sequence variants and marked clinical variability in the extended family | European Journal of Human Genetics - Nature

Vascular Ehlers–Danlos Syndrome in siblings with biallelic COL3A1 sequence variants and marked clinical variability in the extended family | European Journal of Human Genetics Nature

Ehlers–Danlos syndromes: Not just joint hypermobility - New Zealand Doctor

Ehlers–Danlos syndromes: Not just joint hypermobility New Zealand Doctor

The Child Abuse Contrarian - ProPublica

The Child Abuse Contrarian ProPublica

Blood in a chest drain - ERS - European Respiratory Society

Blood in a chest drain ERS - European Respiratory Society

A novel missense mutation of COL5A2 in a patient with Ehlers–Danlos syndrome - Nature

A novel missense mutation of COL5A2 in a patient with Ehlers–Danlos syndrome Nature

Clinical and Genetic Features of Ehlers–Danlos Syndrome Type IV, the Vascular Type - The New England Journal of Medicine

Clinical and Genetic Features of Ehlers–Danlos Syndrome Type IV, the Vascular Type The New England Journal of Medicine

Kathryn EDWARDS Obituary (1985 - 2022) - Newbury, Berkshire - Newbury Today - Legacy obituary

Kathryn EDWARDS Obituary (1985 - 2022) - Newbury, Berkshire - Newbury Today Legacy obituary

Newry mum of two shines a light on invisible disability Ehlers-Danlos Syndrome - Newry.ie

Newry mum of two shines a light on invisible disability Ehlers-Danlos Syndrome Newry.ie

Mum aims to raise awareness of her condition which causes daily dislocations - The Hereford Times

Mum aims to raise awareness of her condition which causes daily dislocations The Hereford Times

Bangor mum's vital new role helping improve the lives of others battling illness - Belfast Live

Bangor mum's vital new role helping improve the lives of others battling illness Belfast Live

Northern Ireland mums on a mission to raise awareness of invisible and life-changing disability - Belfast Live

Northern Ireland mums on a mission to raise awareness of invisible and life-changing disability Belfast Live

Highclere teen to get pilot training through Flying Scholarships for Disabled People - Newbury Today

Highclere teen to get pilot training through Flying Scholarships for Disabled People Newbury Today

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