This page tracks new and upcoming treatment options for Ehlers-Danlos syndromes (EDS). What’s in development? What’s promising? What’s available soon? Current topics include ACLP, COL3A1, CRISPR, gene therapy, celiprolol, angiotensin II receptor blockers (ARBs), irbesartan, dextrose prolotherapy, and more. Jump to section: News, Research, Clinical Trials
Last updated: 1 year ago
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News
- Tackling a connective tissue disorder using nerve stimulation Jun 6, 2023
- Could a vitamin deficiency cause ‘double-jointedness’ and troubling connective-tissue disorder? Apr 10, 2023
- AWARENESS: I ran from my lethal diagnosis [vEDS] for years. Let’s make this rare disease a household word. Oct 10, 2020
- Recordings from Ehlers-Danlos Virtual Summer Conference 2020 now available online Sep 8, 2020
- Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says Aug 13, 2020
- New Screening System Allows Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study Enrollment Without In-person Visits Jul 30, 2020
- The genetic disorder that makes shoulders pop out of sockets Jul 27, 2020
- The Ehlers-Danlos Society Virtual Summer Conference (July 10–12, 2020) Jul 10, 2020
- Study offers potential targets for treating people with Ehlers-Danlos syndrome Jun 4, 2020
- Clarkson University Professor Facilitates First North American ECHO Telementoring Program on Ehlers-Danlos Syndrome Feb 24, 2020
- Why It’s Important for People With Ehlers-Danlos Syndrome to Speak Their Truth Feb 23, 2020
- Ehlers-Danlos Society Accepting Applications for 2020 Research Grants Feb 13, 2020
- Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study UPDATE: Recruitment underway for genetic study of 1000 individuals with hEDS Jan 20, 2020
- COL1-related overlap disorder: a new entry into the classification of Ehlers-Danlos syndromes? Dec 18, 2019
- Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report Dec 12, 2019
- UPDATE: new website for postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI) treatment and research updates Dec 11, 2019
- New research shows hEDS and HSD 10 times more common than previously thought Nov 5, 2019
- AWARENESS: What is Ehlers-Danlos syndrome? Lena Dunham reveals diagnosis Nov 4, 2019
- Sia reveals having Ehlers-Danlos syndrome Oct 5, 2019
- AWARENESS: Sia Reveals She’s Suffering From Ehlers-Danlos Syndrome Oct 4, 2019
- Acer Therapeutics Receives Complete Response Letter from U.S. FDA for use of Edsivo (celiprolol) in vEDS Patients Jun 25, 2019
- FDA Rejects Edsivo NDA for Vascular Ehlers-Danlos Syndrome Jun 25, 2019
- Long battle to get treatment for Ehlers-Danlos Syndrome patients May 9, 2019
- Acer Therapeutics Announces Publication of Vascular Ehlers-Danlos Syndrome (vEDS) Patient Registry Data Apr 16, 2019
Research
- Pain Symptomatology and Management in Pediatric Ehlers-Danlos Syndrome: A Review Sep 21, 2020
- Headaches in hypermobility syndromes: A pain in the neck? Sep 17, 2020
- Current management of the vascular subtype of Ehlers-Danlos syndrome Sep 15, 2020
- Use of complementary therapies for chronic pain management in patients with reported Ehlers-Danlos syndrome or hypermobility spectrum disorders Sep 10, 2020
- Functional gastrointestinal disorders are increased in joint hypermobility-related disorders with concomitant postural orthostatic tachycardia syndrome Aug 16, 2020
- Co-Segregation of Postural Orthostatic Tachycardia Syndrome, Hypermobile Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome Aug 13, 2020
- Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options for Pain and Symptom Relief Jul 24, 2020
- The First Experience of Denosmab Therapy on Patients with Ehlers-Danlos Syndrome and Osteoporosis Jul 21, 2020
- The effectiveness of conservative interventions for the management of syndromic hypermobility: a systematic literature review Jul 17, 2020
- Hypermobile Ehlers-Danlos Syndromes: Complex Phenotypes, Challenging Diagnoses and Poorly Understood Causes [PDF] Jul 6, 2020
- Skin fragility in musculocontractural Ehlers-Danlos syndrome caused by CHST14 variants (mcEDS-CHST14): the role of dermatan sulfate in maintaining skin strength Jun 27, 2020
- Cardiac involvement in classical or hypermobile Ehlers–Danlos syndrome is uncommon Jun 9, 2020
- Mechanisms of aortic carboxypeptidase-like protein secretion and identification of an intracellularly retained variant associated with Ehlers–Danlos syndrome Jun 1, 2020
- A new insight on postural tachycardia syndrome in adults with hypermobile Ehlers-Danlos Syndrome/hypermobility spectrum disorder [PDF] May 20, 2020
- Trends of Vascular Surgery Procedures in Marfan Syndrome and Ehlers-Danlos Syndrome May 19, 2020
- Molecular Genetics and Pathogenesis of Ehlers-Danlos Syndrome and Related Connective Tissue Disorders May 13, 2020
- Effects of Rhythmic Sensory Stimulation delivered using a Vibroacoustic Device on Ehlers-Danlos Syndrome Apr 27, 2020
- Pain due to Ehlers-Danlos Syndrome Is Associated with Deficit of the Endogenous Pain Inhibitory Control Mar 16, 2020
- Clinical features, molecular results, and management of individuals with arthrochalasia Ehlers-Danlos syndrome (aEDS) Feb 24, 2020
- Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study Feb 20, 2020
- An old drug for a rare disease: The example of celiprolol for vascular Ehlers-Danlos syndrome Feb 13, 2020
- Quantitative measures of tissue mechanics to detect hypermobile Ehlers-Danlos syndrome and hypermobility syndrome disorders: a systematic review Jan 18, 2020
- Prevalence of hypermobile Ehlers-Danlos syndrome in postural orthostatic tachycardia syndrome Jan 10, 2020
- Arterial Elasticity in Ehlers-Danlos Syndromes: a possible explanation for the common presence of Orthostatic Intolerance (OI) in all EDS types Jan 4, 2020
- The Many Facets of Hypermobile Ehlers-Danlos Syndrome Jan 1, 2020
- Recent Advances in the Pathophysiology of Musculocontractural Ehlers-Danlos Syndrome Dec 29, 2019
- Hypomorphic zebrafish models mimic the musculoskeletal phenotype of β4GalT7-deficient Ehlers-Danlos syndrome Dec 17, 2019
- Vascular Ehlers-Danlos Syndrome: Can the Beneficial Effect of Celiprolol Be Extrapolated to Bisoprolol? Nov 6, 2019
- Targetable cellular signaling events mediate vascular pathology in vascular Ehlers-Danlos syndrome Oct 22, 2019
- Ehlers-Danlos Syndrome-Related Genes and Serum Strontium, Zinc, and Lithium Levels in Generalized Joint Hypermobility Oct 17, 2019
- Neuromuscular activation differences during gait in patients with Ehlers-Danlos syndrome and healthy adults Sep 9, 2019
- Assessment of the information sources and interest in research collaboration among individuals with Vascular Ehlers-Danlos Syndrome Aug 23, 2019
- Molecular underpinnings of integrin binding to collagen mimetic peptides containing vascular Ehlers-Danlos syndrome-associated substitutions Aug 12, 2019
- A Novel Frameshift COL3A1 Variant in Vascular Ehlers-Danlos Syndrome: insight into genetic variants and clinical expression of vEDS Aug 5, 2019
- Patient perspectives on employment participation in the “hypermobile Ehlers-Danlos syndrome” Jul 9, 2019
- Transcriptome Profiling of Primary Skin Fibroblasts Reveal Distinct Molecular Features Between PLOD1- and FKBP14-Kyphoscoliotic Ehlers-Danlos Syndrome Jul 8, 2019
- Ehlers-Danlos syndrome and other heritable connective tissue disorders that impact pregnancies can be detected using next-generation DNA sequencing Jun 27, 2019
- An acquired or heritable connective tissue disorder? A review of hypermobile Ehlers Danlos Syndrome May 16, 2019
- Genetic basis of hereditary thoracic aortic aneurysms and dissections, including vascular Ehlers-Danlos syndrome Apr 15, 2019
- Response to growth hormone therapy in patients with B4GALT7-associated spondylodysplastic Ehlers-Danlos syndrome Mar 23, 2019
- Molecular insights in the pathogenesis of classical Ehlers-Danlos syndrome from transcriptome-wide expression profiling of patients’ skin fibroblasts Feb 4, 2019
- Inspiratory muscle strength training (IMT) improves lung function in patients with the hypermobile Ehlers-Danlos syndrome Dec 20, 2018
- Ehlers-Danlos syndromes: state of the art on clinical practice guidelines Oct 18, 2018
- Utilizing Next-Generation Sequencing for the Diagnosis and Clinical Management of Vascular Ehlers-Danlos Syndrome Sep 1, 2018
Clinical Trials
- Genetic Variations in Patients with Ehlers-Danlos Syndrome Apr 28, 2020
- Autonomic Small Fiber Neuropathy and Ehlers Danlos Syndromes – Prospective Study and Registry (ProANS) [Observational Study] Mar 17, 2020
- Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices Oct 30, 2019
- Registry of Ehlers-Danlos Syndrome (RED) [Observational Study] Oct 21, 2019
- Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers [Observational Study] Aug 21, 2019
- Somatosensori Remediation for Postural Control in the Treatment of Ehlers-Danlos Syndrome Hypermobility Type (hEDS) Jul 15, 2019
- Evaluation of the Effect of Custom Compression Garments on Standing Static Balance in Ehlers Danlos Syndrome Jul 15, 2019
- Study of Arterial Properties by Ultra-high Frequency Ultrasound in Fibromuscular Dysplasia and Vascular Ehlers-Danlos Syndrome (FUCHSIA-FR) Mar 13, 2019
- Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome (ARCADE) Jul 10, 2018
- Gait Retraining in Patients With Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome Jul 2, 2018
- Prevalence of FODMAP Intolerance and JHS in FGID and Association With Microbiome, Dyssynergic Defecation and Dietary Intervention (PreDiMi) Mar 9, 2018
Projects
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