April 2017

“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along […]

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Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)

It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to

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Talking medication and sleep for National Sleep Awareness Week

Did you know this week is National Sleep Awareness Week? Sleep disorders affect around 50-70 million US adults, and troubled sleep is common within the patient community – just take a look at the results from a patient poll we did with you in 2015. There are many reasons someone might be struggling with a

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April is Sjogren’s Awareness Month

It’s April, which means it’s also Sjogren’s Awareness Month. Why do we need awareness? Around four million Americans have Sjogren’s, but less than half of those patients are diagnosed. Sjogren’s is often referred to as an invisible disease and despite patients’ severe discomfort, many don’t often see it as debilitating. This can be isolating for

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Member voices: I have IBS, here’s what I do…

If you’re living with irritable bowel syndrome (IBS) you’re not alone. In fact, IBS affects up to 1 in 7 Americans, so chances are you may know someone who is going through the same thing. Despite it being so common, many people living with IBS are unaware that their symptoms indicate a medically recognized disorder,

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World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her

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PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases

CAMBRIDGE, Mass.–(BUSINESS WIRE)—PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease. Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage

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World Health Day 2017: #LetsTalk about depression and mental health

Today is World Health Day! This year, the World Health Organization (WHO) hopes to spark discussions about mental health with their campaign called “Depression: Let’s talk.” Depression affects more than 300 million people of all ages, from all walks of life, in all countries – but less than half of people with depression (even less

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