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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...

Ehlers‒Danlos Syndrome (EDS) is a rare disease affecting approximately 1 in 5,000 people. Although ophthalmic conditions associated with...

Presented at the Pacific Northwest Vascular Society Annual Meeting, Seattle, WA, on October 11, 2018 and in part at the fifth GenTAC...

American Journal of Medical Genetics Lara Bloom first author on 'The International Consortium on the Ehlers–Danlos Syndromes', published...

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