Organ Transplants

PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

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

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  […]

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Series Premiere of “The Patient Voice” – Meet Pokie Too!

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

“This represents my family, we share everything together.” – PokieToo, PatientsLikeMe Parkinson’s Community “The Patient Voice” is here!  Are you ready to listen in?  Today is the official premiere of our new PatientsLikeMeOnCallTM podcast, “The Patient Voice.”  Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s

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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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Will Openness Bring About a Breakthrough?

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

Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same

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Flickr-ing PatientsLikeMeInMotionTM

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

Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotionTM program. Now you can see photos of members just like you in motion!   We are excited to share the experience of sponsored teams and

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Extending Boston’s Commitment to Organ Transplantation

2 Comments / Organ Transplants / By

Attending the National Kidney Foundation’s 2010 U.S. Transplant Games was an eye-opening experience.  And it wasn’t just the thousands of transplant recipients, living donors, and donor families who made the event so memorable.  It was the passionate commitment to transplantation by so many different individuals and organizations. Dozens of nonprofits, donor and support groups, and

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All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”

Organ Transplants, Patient Experiences / By

www.flickr.com 2010 Transplant Games photoset As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s

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PatientsLikeMe Gets into the Spirit of the Transplant Games

1 Comment / Organ Transplants, Patient Experiences / By

The spirit of Team Mid New England and the U.S. Transplant Games has infiltrated PatientsLikeMe!  We have just gotten back from an amazing trip to Madison, WI to watch Team Mid New England take to the athletic fields and to spread the word about our transplants community at PatientsLikeMe. We had the opportunity to sponsor

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It’s Official: Sharing Health Data Improves Outcomes

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

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct

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