online communities Archives |

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

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 »

Sharing, Openness…and Privacy?

1 Comment / Patient Experiences / By patientslikeme

Every so often, we sit down to try and make our business objectives clearer to our patient communities. Why? Well, we can’t have a business without you and our communities can’t exist to help patients without a business. This often results in our Privacy Policy and User Agreement being updated to help clarify our goals

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Rare Diseases: Well-Done Online

3 Comments / Rare Diseases / By patientslikeme

There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over

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Introducing “The Patient Voice” – First up? Inpatient Therapy

2 Comments / Mental Health, Patient Experiences / By patientslikeme

Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that

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Sharing to Feel Better

1 Comment / Patient Experiences, Research / By patientslikeme

Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but

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CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday

5 Comments / ALS, Fibromyalgia / By patientslikeme

It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site. Spread the word! Let’s bring a new level of understanding to this disease in a way that nobody else can. Next week: a blog series regarding this new community and the people in it. If you haven’t

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PatientsLikeMe Update: May 2007

ALS, Multiple Sclerosis, Parkinson's Disease / By patientslikeme

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other. We are also thrilled to announce the debut

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online communities

Where are the Cures? An interview with Myelin Repair Foundation