Rare Diseases

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

“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 quilt, a handmade and inspiring piece of patchwork pulled together by members all over the world.  A valuable member of the PatientsLikeMe community, Pokie is recognized in the greater Parkison’s community as a leader and advocate.  She has worked a lot with various nonprofits, including as a consultant for the Parkinson’s Disease Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every year. As you’ll learn from hearing from other members throughout this series, everyone knows her and loves her.  Pokie is truly an inspiration to everyone she meets. Listen in to learn about how the PatientsLikeMe PD quilt was created, how it’s being used to empower other patients, and why she calls PatientsLikeMe her family.

Will Openness Bring About a Breakthrough?

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 spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event. This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases. The two events will take place respectively on October 7-8 and November 9-10  and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research.  Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to …

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Flickr-ing PatientsLikeMeInMotionTM

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 three-star members with everyone. Since its inception in 2009, PatientsLikeMeInMotionTM has sponsored more than 115 teams across seven disease communities.  With over 2, 100 participants to date, the program has given many members the chance to demonstrate their PatientsLikeMe spirit as well as connect with others who have shared similar experiences. It’s always great to see how PatientsLikeMe members are just as passionate offline as they are online.  Now, everyone can catch a glimpse our members in action from New York to Ohio to California!  The PatientsLikeMeInMotionTM Flickr page currently hosts photos from walks in the ALS, MS, Parkinson’s, Transplants, Fibromyalgia and Mood communities…with more to come.  We are proud to feature events such as The National MS Society‘s “Walk MS” series, ALS Association’s “Walk to Defeat ALS” series, Parkinson’s Unity Walk, and events run by the National Alliance on Mental Illness (just to name …

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It’s Official: Sharing Health Data Improves Outcomes

(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 from our users how they were using the site and whether the information they’d learned was helping to influence their interactions with healthcare providers, their decision-making, and ultimately their outcomes. Because JMIR is an open-access journal, you can download the whole paper for free here, but here are some of the highlights from the 1,323 patients that completed the survey: Almost all of our patients (94%, N=1,249) were diagnosed when they joined the site; an important factor in joining a community of “patients like me” The majority of members (72%, N=952) agreed that the site was helpful for learning about a symptom they have experienced (check out our symptom reports to see what they’re learning!) Many respondents (57%, N=757) agreed that the site had helped them to understand side effects of their treatments (check out our treatment reports to find out more!) and 42% (N=559) …

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PatientsLikeMe – Out & About and OnCall

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences. Watch the latest business video at <a href=”http://video.foxbusiness.com/” mce_href=”http://video.foxbusiness.com/”>video.foxbusiness.com</a> Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.” Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis Listen | David S. Williams III …

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

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 and what it means for MS patients.  Here’s the interview between Molly Cotter (PatientsLikeMe nonprofit development) and Accelerated Cure’s Operations and Repository Director, Sara Loud. — (Molly) What is the Accelerated Cure Repository? Accelerated Cure Project, (www.acceleratedcure.org), is a research-focused national nonprofit whose mission it is to cure MS by determining its causes, triggers, and disease mechanisms.  Our main resource to accomplish this is our Repository, a collection of biological samples and data collected from people with MS and related demyelinating diseases.  We collect these samples and data at our 10 collection sites across the country and then distribute them to scientists, both academic and commercial.  The Repository is a critical resource to the research community.  We’ve taken on the burden (time, cost, complexity) of sample and data collection so that scientists can spend their time and money doing their most important work, the research. …

Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud
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Where are the Cures?
An interview with Myelin Repair Foundation

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 new patient treatments in all diseases.  PatientsLikeMe co-founder Jamie Heywood asked Scott Johnson, President and Founder of MRF, about the campaign. (Jamie) What’s the big idea behind Where are the Cures? (Scott) The big idea? Finding a way or ways to accelerate the development of new patient treatments.Developing new medicines or treatments for complex diseases is extraordinarily difficult. But it is not impossible and it should be happening at a faster rate than it has been. I believe the single most rate-limiting factor is the failure to move promising scientific discoveries made in academic laboratories into the commercial development pipeline.The problem is fairly simple. On the front end of the value chain, academic laboratories are spending upwards of $40 billion a year in government and non-profit dollars to make basic scientific discoveries that may be potential drug targets. On the back end, the pharma industry …

Where are the Cures?
An interview with Myelin Repair Foundation
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FDA’s New Guidance on Patient-Reported Outcomes

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 questionnaires we use on PatientsLikeMe to measure your health (such as the mood map, ALS-Functional Rating Scale/ALS-FRS, and other rating scales) are all examples of PROs, and they’re designed to accurately reflect the level of disease severity for a particular condition. Contrast PROs with the results of a blood test or an MRI scan; these are measured by someone other than the patient and are interpreted by healthcare providers. When a disease is relatively well understood and can be measured directly, as in HIV, measurement can be performed with objective measures such as blood levels (e.g., CD4 count and viral load). However, for many disease there is no objective measure for a disease (e.g., fibromyalgia). That means that trials and other clinical research studies are dependent entirely on the report of the patient themselves through PRO instruments. The FDA has recently released a new report: …

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PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite

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 – Today, PatientsLikeMe, the leading online community for patients with life-changing diseases, announces the acquisition of ReliefInsite, a pioneering online pain management company. “Right now, there are more than 20,000 patients on PatientsLikeMe experiencing real pain,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “By acquiring ReliefInsite, we can improve the way we help patients effectively manage their pain.” Conceived by founder Fred Eberlein in 2000, ReliefInsite’s patented online pain management technology developed into a secure HIPAA-compliant platform designed to help patients monitor their pain levels and share that information directly with their doctors. “I’ve spent more than a decade inventing and advancing the technology platform at ReliefInsite to help patients manage their pain and improve the patient-doctor relationship,” says Eberlein.  “I’m excited this work has led me to my new home at PatientsLikeMe, where we can work together to better align industry’s interests with …

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A Year in Review: PatientsLikeMe in 2009

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 communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series …

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