Exploring the science, research, and lived experiences of complex chronic conditions through thoughtful, evidence-driven science communication.
| Platform |  | Pricing | Freemium | Publishes | Twice weekly |
|---|---|---|---|---|---|
| Issues | 211 | Founded | 3 years ago | Last Issue | 10 days ago |
| Active | |||||
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cortneygensemer.substack.comLatest Issues
Leaving Academia, Not Leaving the Work
I fell in love with research during my PhD. I had found a topic I cared about, the biology of Ehlers-Danlos syndromes, in a lab that was willing to let me study it. I also have hEDS myself, so it was deeply personal. I stayed on as a postdo...
Is EDS Awareness Month Still Doing What We Think It Is?
Every May, the EDS community is really online. Awareness posts are shared and reshared. And I, as someone who lives with hEDS, who has built a career trying to advance research in this space. find myself asking a question: is any of this wo...
5 Things Happening Right Now in the Chronic Illness Space You Need to Know About
The following summaries are based on publicly available announcements and reports.
May was a busy month in the chronic illness space. From a landmark name change affecting more than 170 million people with PCOS (now PMOS), to new FDA appro...
Underrecognized Clinical Areas in Hypermobile Ehlers-Danlos Syndrome
Most people who eventually receive a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) already know that the diagnostic criteria don’t capture everything. The 2017 criteria were a necessary stan...
Cardiac Involvement in Hypermobile EDS
Two new papers were recently published on cardiac involvement in hypermobile Ehlers-Danlos syndrome (hEDS)
Disclaimer: The views expressed here are my own and do not represent my employer or any affiliated organization.
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Authors
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I’m a scientist, science communicator, and chronic illness patient. My work spans genetics, molecular biology, and clinical research in complex chronic illnesses. I write about science and research, lived experience, and patient-centered science.
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