Parkinson’s Disease

Where are the Cures?
An interview with Myelin Repair Foundation

5 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients.  Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of […]

Where are the Cures?
An interview with Myelin Repair Foundation Read More »

FDA’s New Guidance on Patient-Reported Outcomes

ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report

FDA’s New Guidance on Patient-Reported Outcomes Read More »

PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite

1 Comment / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Rare Diseases / By

Today’s news release announcing acquisition of ReliefInsite.  Want to receive future announcements?  Sign up for our RSS feed on the press page. – – – FOR IMMEDIATE RELEASE PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE 20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe Cambridge, MA and New York City, NY – February 16, 2010

PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite Read More »

A Year in Review: PatientsLikeMe in 2009

4 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year! Community Milestones This year, the 15+ disease

A Year in Review: PatientsLikeMe in 2009 Read More »

Harnessing New Media for Patient Advocacy (Part II)

3 Comments / Epilepsy, Fibromyalgia, Multiple Sclerosis, Parkinson's Disease, Patient Experiences / By

A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI.  The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August.  This time the

Harnessing New Media for Patient Advocacy (Part II) Read More »

New Parkinson’s Genetics Engine to Enhance Research Through Shared Data

4 Comments / Parkinson's Disease, Research / By

Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the

New Parkinson’s Genetics Engine to Enhance Research Through Shared Data Read More »

Sharing Is A Right As Well

10 Comments / ALS, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,

Sharing Is A Right As Well Read More »

PatientsLikeMe Teams Up with 23andMe to Help Parkinson’s Patients

Parkinson's Disease, Patient Experiences, Research / By

Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive.  Here’s our recent announcement about our new partnership with 23andMe. ————– PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today

PatientsLikeMe Teams Up with 23andMe to Help Parkinson’s Patients Read More »

PatientsLikeMe at 2009 Parkinson’s Unity Walk

4 Comments / Parkinson's Disease, Patient Experiences / By

PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s

PatientsLikeMe at 2009 Parkinson’s Unity Walk Read More »

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

Gambling in online PD patients higher than previously reported Read More »

Scroll to Top