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