Symptomatic
The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach to the subject,...
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Jun 11
Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders
The Ehlers-Danlos Society Extension for Community Health Care Outcomes (EDS ECHO) is a portfolio of teleconferencing programs developed...
Jun 11
An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review
Thoracic aortic aneurysm and dissection are complex diagnoses that require management by multidisciplinary providers using a variety of...
Jun 11
Implementation of telemedicine in the care of patients with aortic dissection
Telemedicine uses telephone-based or any form of digital communication for remote clinical services. It has been a field of interest for...
Jun 11
Aortic dissection in pregnancy and the postpartum period
Pregnancy-associated aortic dissection (AD) is a rare event, with an incidence of 0.0004% per pregnancy. The work of the Aortic...
Jun 11
Lived experiences of people with or at risk for aortic dissection: A qualitative assessment
Aortic dissection (AD) is a life-changing event that is often accompanied by a loss of normal quality of life. Survivors of AD go on to...
Jun 11
The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community
Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is...
Jun 11
Consensus recommendations on how to assess the quality of surgical interventions
Postoperative complications represent a major public health burden worldwide. Without standardized, clinically relevant and universally...
Jun 11
The mental health impact of aortic dissection
Although the topics of surgical techniques and medical therapies have been widely studied in aortic dissection (AD), studies examining...
Jun 11
Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study
Background: A condition is defined as rare if it affects fewer than 1 in 2000 people in the general population. Limited evidence suggests...
Jun 11
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health,...
Jun 11
Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study
Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their...
Dec 15, 2021
The Power of Patient-Led Global Collaboration
In late 2017, the global nonprofit, The Ehlers-Danlos Society (TEDS), was awarded a "Pipeline to Proposal" Tier A award from the...
Feb 16, 2021
How Are Patients With Rare Diseases & Their Carers In The UK Impacted By The Way Care Is Coordinated
Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is...
Jan 28, 2020
Survey of Ehlers‒Danlos Patients’ Ophthalmic Surgery Experiences
Ehlers‒Danlos Syndrome (EDS) is a rare disease affecting approximately 1 in 5,000 people. Although ophthalmic conditions associated with...
Aug 24, 2019
Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with
Presented at the Pacific Northwest Vascular Society Annual Meeting, Seattle, WA, on October 11, 2018 and in part at the fifth GenTAC...
Mar 17, 2017
The International Consortium on the Ehlers–Danlos Syndromes
American Journal of Medical Genetics Lara Bloom first author on 'The International Consortium on the Ehlers–Danlos Syndromes', published...
Mar 17, 2017
The 2017 International Classification of the Ehlers–Danlos Syndromes
American Journal of Medical Genetics Lara Bloom contributing author on 'The 2017 International Classification of the Ehlers–Danlos...
"Never underestimate the power of the patient voice.
Our narrative brings the purpose, the reason and the emotion. Without it, a project is not complete."
- Lara Bloom
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