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Spinal Muscular Atrophy Patient Leader #FollowFriday – April 20th, 2018

Spinal Muscular Atrophy Patient Leader #FollowFriday – April 20th, 2018

On this #FollowFriday, we’re featuring three really powerful Patient Leaders. Below you’ll meet Alex, Ariella and Heather who are living with Spinal Muscular Atrophy. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. We encourage you to check out these Patient Leaders, learn ...

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Testicular Cancer Awareness: Tip for Self-Check

Testicular Cancer Awareness: Tip for Self-Check

April is Testicular Cancer Awareness Month, and although we should be staying on top of our health year-round, it’s a great time to spread the word about this disease. It’s important to not only celebrate the survivors and also remember those who lost their bout with TC, but also spread ...

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How to use Facebook groups as a patient community

How to use Facebook groups as a patient community

When my husband and I created our website Diabetes Strong in 2015, one of our greatest challenges was to find a way to communicate directly with our community – outside of just comments on individual blog posts and our newsletter. A review of the existing diabetes forums and message boards ...

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Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the ...

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March #WEGOHealthChat Recap: Combating the Stigma of Chronic Illness

March #WEGOHealthChat Recap: Combating the Stigma of Chronic Illness

Living with a chronic illness not only means dealing with a lifetime of complications but it also means endlessly fighting off the stigma associated with chronic illness. How do you combat the stigma of chronic illness? Is it through education and awareness? Is it your role as a Patient Leader ...

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For Health Communities, Facebook is Too Important to Delete

For Health Communities, Facebook is Too Important to Delete

No one is happy about Facebook’s failure to protect our data, including its CEO, Mark Zuckerberg, who issued a mea culpa in newspaper ads over the weekend. “This was a breach of trust and I’m sorry we didn’t do more at the time,” Zuckerberg said. “We have a responsibility to ...

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