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Taking It to the Streets: The Spring PatientsLikeMeInMotion Report

1 Comment / ALS, Epilepsy, Multiple Sclerosis, Parkinson's Disease / By

Every year, PatientsLikeMe sponsors run/walk/bike teams around the country through PatientsLikeMeInMotion. Led by a three-star member – someone with a complete health profile at PatientsLikeMe – each team receives bright blue PatientsLikeMe t-shirts, business cards and a donation towards their fundraising goal. Some of the events our members participate in include the Parkinson’s Unity Walk, […]

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ALS Awareness 2010: A Four Year Journey With Our PALS

3 Comments / ALS, Patient Experiences, Research / By

Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care.  Together, we have

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It’s Rare Disease Day!
Interview with Gracie (Devic’s NMO Patient)

6 Comments / Patient Experiences / By

Today, we’re joining the National Organization for Rare Disorders (NORD) to help raise awareness for Rare Disease Day.  In recognition of the day, we recently interviewed Gracie, a valued member of our Devic’s Neuromyelitis Optica (NMO) community. Devic’s NMO is a rare autoimmune inflammatory disorder which affects the optic nerve and spinal cord and is

It’s Rare Disease Day!
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Interview with Thomas Goetz
(author of The Decision Tree)

3 Comments / ALS, Mental Health, Patient Experiences / By

In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (“Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked

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(author of The Decision Tree) Read More »

PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin

ALS, Patient Experiences, Research / By

The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big

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Gambling in online PD patients higher than previously reported

19 Comments / Parkinson's Disease, Research / By

When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been

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