My story begins at a time when there was little information about celiac disease, and when going gluten-free was a trend or a lifestyle choice. As leader of the Mayo Clinic media relations team 15 years ago, I became aware of how patients were increasingly using blogs, discussion boards, and other social networking tools to share information, find support, and learn more about diseases and health conditions.[by Lee Aase]
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Recent research suggests that the ways in which men and women describe heart attack symptoms differently can affect diagnosis in urgent situations. Heart attack survivor and patient advocate Maggie Parke tells us her story.
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I was 48 years old when I first encountered serious illness – I was diagnosed with breast cancer. It came as surprise since no one in my family had breast cancer. I needed a mastectomy and underwent six months of chemotherapy – the toughest 6 months in my life! [by Ingegerd Enscoe]
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Online patient communities have become a staple part of the healthcare landscape in recent years, presenting the sector with ever greater opportunities to identify, understand and tackle unmet need.
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In drug development clinical trials, there is a need for balance between restricting variables by setting enrollment criteria and representing the more diverse patient population that may use a product once it is approved. Although recent policy initiatives focusing on inclusion of historically underrepresented groups are being implemented, barriers still remain. [by. Farris Timimi; Sara Ray; Erik Jones; Lee Aase; Kathleen Hoffman]
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Event planner and colorectal cancer survivor Kim Hall-Jackson tells us how she hopes to improve rates of diagnosis, help people through their journeys and make the voices in the patient community more diverse.
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In 2001, at the age of three, my primary focus in life was watching Powerpuff Girls–and keeping my one-year old brother from drooling on my collection of stuffed animals. Not surprisingly, I didn’t notice when my dad started acting strange. [by Taylor Kane]
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A week ago, while at work, Dad (a.k.a. my father-in-law) had bumped his head hard. It was only when he had to sit down because he felt a sudden coldness on his head, that he drove – after work – to my brother-in-law’s home so they could all go to the emergency room (ER). It’s a family trip whenever they need medical care because they cannot communicate in English. [by Soojin Jun]
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What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? [by Justin McClanahan]
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