Epilepsy

Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

1 Comment / ALS, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year. Successes 1.  New Partnerships, New Communities In the first …

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Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)

Epilepsy, Fibromyalgia, Mental Health, Organ Transplants, Patient Experiences, Research / By

The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011.  Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010. The R&D team published and presented some unprecedented insights based on what …

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Sharing and Learning with PatientsLikeMe

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

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions. We also want to thank all of you who have contributed to the 90 …

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Share and Compare: Be a PRO! Understand Your Experiences in Context

1 Comment / Epilepsy, Patient Experiences, Research / By

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you. Patient …

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Epilepsy Awareness Month: The Alternative Way

1 Comment / Epilepsy, Patient Experiences / By

It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.”  Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected …

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Epilepsy Awareness Month: What do you know about Epilepsy?

1 Comment / Epilepsy, Patient Experiences / By

Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients.  In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community. Did you know… You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, …

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Drug Safety: It’s About More Than Just Compliance

2 Comments / Epilepsy, Multiple Sclerosis, Organ Transplants / By

Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences. …

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Know Thy Self – Measuring Your Quality of Life

2 Comments / Epilepsy, HIV/AIDS, Organ Transplants, Parkinson's Disease, Research / By

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community …

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Video: Introducing the New Epilepsy Community

Epilepsy, Patient Experiences / By

In honor of the launch of the new PatientsLikeMe Epilepsy community this week, we have created a video highlighting how patients are coming together to share their experiences with epilepsy and learn from others. It’s now available on our PatientsLikeMe Epilepsy YouTube page. This short video includes quotes from some of our members about what …

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