News & Media

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...

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...

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...

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...

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...

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