Multiple Sclerosis

Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud

2 Comments / Multiple Sclerosis, Patient Experiences, Rare Diseases / By

It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS.  We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie.  We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository […]

Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud Read More »

Multiple Sclerosis Awareness Week: Interview with Gardener

1 Comment / Multiple Sclerosis, Patient Experiences / By

It’s National Multiple Sclerosis (MS) Awareness Week.  There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes. In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit

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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

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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

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Exciting New ALS Progression Chart Upgrades

2 Comments / ALS, Multiple Sclerosis, Patient Experiences / By

Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements. We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other

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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

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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

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