Dec 15, 2021The Power of Patient-Led Global CollaborationIn late 2017, the global nonprofit, The Ehlers-Danlos Society (TEDS), was awarded a "Pipeline to Proposal" Tier A award from the...
Feb 16, 2021How Are Patients With Rare Diseases & Their Carers In The UK Impacted By The Way Care Is CoordinatedCare coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is...
Jan 28, 2020Survey of Ehlers‒Danlos Patients’ Ophthalmic Surgery ExperiencesEhlers‒Danlos Syndrome (EDS) is a rare disease affecting approximately 1 in 5,000 people. Although ophthalmic conditions associated with...
Aug 24, 2019Assessment 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...
