How pharmacist Lisa Jamieson is raising awareness of Ehlers-Danlos syndrome

by Julia Robinson, originally featured on on 26 March 2018 Lisa Jamieson’s self-diagnosis of Ehlers-Danlos syndrome came years after she first became unwell. Here she tells Julia Robinson how she discovered the link between her seemingly unrelated symptoms, and how her research is raising awareness of the connective tissue disorder. A constant drive to get more from […]
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ICD-10 Codes Changes Proposed for the Ehlers-Danlos Syndromes

We are very pleased to report that following an effort led by Dr. Brad Tinkle with support from pharma companies and the International Consortium on Ehlers-Danlos syndromes and Related Disorders, a proposed change to the ICD-10 diagnosis codes was presented at the recent committee meeting. It will go for public opinion then be voted on […]
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Staying Strong – Using Your Voice

By Naomi Kirtner, originally posted at  This week is National Patient Safety Week, March 11 – 18. Although we lost our daughter, Talia —an EDS zebra—due to reckless and negligent care, I find it difficult to feel cheerful about this kind of national awareness program. On the one hand, perhaps it does work as […]
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