2016-2017 Team of Advisors

Team of Advisors member Laura takes over the PatientsLikeMe Instagram for World Mental Health Day

In honor of World Mental Health Day, we asked PatientsLikeMe member Laura (thisdiva99) to take over our Instagram feed for the day. Laura is a professional opera singer, Massachusetts native, a member of the PatientslikeMe Team of Advisors, and is living with bipolar disorder. She gave us a glimpse into a day in her life, Check […]

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Team of Advisors member Kimberly shares part two of her insurance series

  Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors and is living with autonomic neuropathy, a rare disease which forced an end to her career as a Registered Nurse. In part 1 of her insurance series, she tells the story of how eight of her doctors became out-of-network overnight, and how she navigated

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5 tips for practicing self-care when your chronic illness is trying to take over

As a woman with bipolar disorder I and PTSD, I can pretty safely say that no two days are the same. There are days when the world is sunshine and roses; life is grand! Then there are days when the inside of my brain is trying to run the show without me, and it’s leaving

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Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

  Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she

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What’s your #MoreThan story? 11 patients – and counting – share theirs in a new video series

You’re more than your than your condition. You’re you – a father, a sister, a Nana, a spouse, a dog Mom, a sports fan, a professional singer, a veteran businessman, a traveler, a devoted friend, a furious yet hopeful fighter. You play countless roles, and patient is just one of them. There’s power in your

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds

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The record on research: Catching up with TOA member Cris

Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials

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Member Kimberly opens up about living with a rare disease

Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that

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Communicating drug risks/benefits so the message really gets through

Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for

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Meet Lindsay from the PatientsLikeMe Team of Advisors

  Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others.  Keep reading to get to know her story and how she tackles

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