Symptomatic
Medical Publications
Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders
An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review
Implementation of telemedicine in the care of patients with aortic dissection
Aortic dissection in pregnancy and the postpartum period
Lived experiences of people with or at risk for aortic dissection: A qualitative assessment
The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community
Consensus recommendations on how to assess the quality of surgical interventions
The mental health impact of aortic dissection
Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study
The Power of Patient-Led Global Collaboration
How Are Patients With Rare Diseases & Their Carers In The UK Impacted By The Way Care Is Coordinated
Survey of Ehlers‒Danlos Patients’ Ophthalmic Surgery Experiences
Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with
The International Consortium on the Ehlers–Danlos Syndromes
The 2017 International Classification of the Ehlers–Danlos Syndromes
"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