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I’m 29 and doing my part to stop COVID-19. Please join me. | Expert Opinion
Many of my peers are living knowing there is a tomorrow, presuming that it is as healthy as it is today. Unfortunately for me, I am living knowing that one day I could end up developing Huntington’s Disease (HD), just like my mom. This means I could slowly deteriorate, both physically and mentally, to the point where I will be unable to do anything independently. [by Seth Rotberg]
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Bringing men out of isolation after a cancer diagnosis
Studies show that men often isolate themselves when diagnosed with cancer – which can have severe impacts on mental health and outcomes. Trevor Maxwell is hoping to address this by creating an online community to bring male cancer patients and survivors together. [by George Underwood]
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Raise Your Voices: Social Network Provides Safe Place for Patients to Share Stories and Influence Research
In this episode, Brian Loew, founder and CEO of online patient portal Inspire, talks about the value to patients and caregivers of providing a safe and trustworthy online social network--a “peaceable kingdom,” as he calls it. [Hosted by: Steve Smith]
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Using data from an online health community to examine the impact of prostate cancer on sleep
Previous epidemiological studies have examined the relationship between sleep disturbances and prostate cancer risk and/or survival 1, 2. However, less has been published about the impact of sleep disturbance on quality of life (QoL) for prostate cancer survivors and their caregivers. [By: Rebecca Robbins, Girardin Jean‐Louis, Nicholas Chanko, Penelope Combs, Nataliya Byrne, Stacy Loeb]
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The Health Design Podcast
Marina Ness, MPH is a public health professional with experience in pharmaceutical market research, healthcare data management, and health policy analysis. As the Director of Research at Inspire, Marina leverages research expertise in a wide range of health domains, including oncology, rare disease, mental health, women’s health, sustainability and environmental health, public health emergency management, and epidemiology.
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Inspire launches Keep Us All Safe campaign to help curb COVID-19
Inspire has launched a COVID-19 prevention campaign, Keep Us All Safe, with public service announcement (PSA) videos by patients at high risk for contracting the virus. “We see an enormous amount of coronavirus-related discussion within our two-million-member community—not surprising, as many of them are at high risk to be affected by COVID-19,” said Inspire CEO Brian Loew. “We created the Keep Us All Safe campaign to show everyone these raw, first-person stories, many by younger people, that can help increase social distancing and slow and stop the spread of the virus. These are the faces of people at risk.”
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Patient Insights: Eczema
Ellen Scheib has had eczema for over twenty years, and though drugs have helped her manage the condition there are still many patients with no viable treatment options. She tells us what it’s like to live with eczema and how advocacy can bring hope to people with the skin condition. [by George Underwood]
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Virtual Connection in a Time of Social Distance
Jonathan Sommers remembers ​many nights spent alone in a hospital room after he had numerous complications from his surgery for testicular cancer in 2012. The coronavirus pandemic brings many of the same fears to the surface for the 36-year-old writer, filmmaker and producer who lives in Santa Monica, California.​​ [by Marci A. Landsmann]
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Living with chronic pain is hell. Social media makes it a little less grim
Once again, it’s the middle of the night, and I’ve been up obsessively googling a new symptom. Every so often I glance at the head on the pillow next to mine, checking to make sure my partner isn’t waking up from the glow of my phone or the shuffle of elbows on linen. [by: Cheyenne McDonald]
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Coping with disease and disability in the time of coronavirus
Sassy Outwater-Wright has fought off cancer three times in the last 33 years, losing most of her eyesight to a rare form of the disease at the age of three. And now, at age 37, she's fighting a fourth cancer -- this time in her brain. [by Ryan Prior]
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