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Understanding muscular dystrophy
Chris Anselmo, who has a rare form of muscular dystrophy, hopes to educate pharma on the patient journey and help new patients cope with a life-changing diagnosis. We spoke to him to find out more.
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Hope for the Best, and Plan for the Worst–Experts by Experience
Life, as I knew it, was crashing down. I was sitting with my wife in the oncologist’s office and had just been diagnosed with stage 4 pancreatic cancer. But, I was about to experience some of the most optimistic and hopeful words I had ever heard. [by Allan Butler]
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If Remission is the Goal, Why Do I Still Feel Bad? Experts by Experience
My life took an unexpected turn after I was diagnosed with inflammatory bowel disease (IBD). I was lost, trying to navigate the nature of this new disease, this new identity, in a new college where no one seemed to understand.
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A Good Night’s Sleep – Experts by Experience
I was diagnosed with lymphedema last year, while undergoing treatment for pain and swelling issues with my right ankle, knee, and leg. After going over the examination and test results, the doctor asked me about my sleep quality and habits.
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Spin in Health News Affects Patients' Views on Treatments
When health news stories misrepresent study findings, patients and caregivers are more likely to view the treatments as beneficial, a study published online June 4 in BMC Medicine shows.
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There’s no I in T.E.A.M when it comes to healthcare
After being diagnosed with a rare non-malignant brain tumour, Claire Snyman has dedicated herself to inspiring people to put their health in their own hands. She now advocates for closer collaboration between patients and healthcare teams, and has developed the ‘T.E.A.M’ approach as a way to help people become active participants in their health.
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Nebula Genomics Inks Deal With EMD Serono To Help Enable Personal Genome Sequencing
Startup Nebula Genomics has partnered with EMD Serono, the biopharmaceutical business of Germany's Merck, for a whole-genome sequencing study of lung cancer. The project aims to test Nebula's platform, which enables individuals to obtain their own sequencing data and interact directly with genomics researchers for use of that data.
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Brian Loew, CEO of Inspire: Accelerating medical progress through connected patients – Harlow On Healthcare
My guest for this episode of Harlow On Healthcare is Brian Loew, CEO of Inspire (@TeamInspire). Brian created Inspire in 2005 with the goal of accelerating clinical trial recruitment through the use of safe trusted online social networks organized by medical condition for patients and their caregivers.
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Adverse drug reactions detected on social media with natural language processing
Cancer patients undergoing chemotherapy often share word of their adverse reactions to the drugs in online health forums. Researchers at Stanford have used natural language processing to mine these posts, accurately flagging detrimental side effects well before clinical journals advise caution.
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Hope: A Strategy for Managing Chronic Disease–Experts by Experience
Time is one of the most priceless gifts we all have, but which can be robbed in an instant from those of us with chronic illness and disease.
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