Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event
NEW YORK, NY - November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions. The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.
“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E. “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”
The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.
“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”
For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org. For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.
ABOUT R.A.R.E PROJECT
The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.
ABOUT PATIENTSLIKEME
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor). Put simply, how can we help patients like you take the correct dosages at the correct times?
Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year - but currently is spending - in the midst of an economic downturn.
Here are some of the other noteworthy takeaways:
Of that $300 billion, more than $100 billion is concentrated in four cardio-metabolic disorders: diabetes, hypertension, high cholesterol and heart disease.
A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.
Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.
Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.
To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.
Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.
Do you believe connecting with - and learning from - other patients is critical to adherence? Share your thoughts in the comments section.
Last night, the PatientsLikeMe team came together for a great cause: the “White Coat Affair” gala benefit in support of the ALS Therapy Development Institute (ALS TDI). Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS.
Held the night before the institute’s 7th Annual Leadership Summit, the gala event included the presentation of the first-ever “ALS TDI Lou Gehrig Award” to US Congressman Michael Capuano as well as special recognition for ALS TDI Chairman of the Board Augie Nieto, who has raised more than $30 million for the institute since 2007.
Congratulations to ALS TDI on 12 years of cutting-edge research and leadership.
The 12th International Congress for Human Genetics (ICHG) was a fantastic learning experience with 7,200 geneticists, doctors and researchers in attendance – making it the largest ICHG ever. The talks were of the highest quality, and the latest genetics research was presented and discussed. It was an honor to give one of these presentations, since only 8% of those who applied were awarded the opportunity.
That brings me to the main purpose of this blog post: A big THANK YOU to the members of PatientsLikeMe.Your data made our presentation possible.I spoke about the ALS pilot program for genetics entry and search functionality, which allows ALS patients to enter their causative genetic mutations (such as SOD1 A4V, SOD1 D90A and VAPB P56S)and find others with the same genetics.It was a groundbreaking project, and we hope to implement it site-wide in the near future.
I also presented some of the key results from our recent survey on genetic testing:
16% of you have had some form of genetic testing.
Of those who have been tested, 31% have had a direct-to-consumer genetic test.
If cost were NOT a consideration, 83% of you would be at least moderately interested in getting a comprehensive personal genetic test.
68% of you said you would be at least moderately interested in finding others with the same genetics as you.
Thanks again for your participation in the survey, for being members of PatientsLikeMe and for sharing in our research efforts.I hope that next year I’ll be presenting PatientsLikeMe’s site-wide genetics functionality.
In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Reviewmagazine.This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus.
Below are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work.“They are presenting a concrete solution to a big, almost ideally civilization-scale problem.”MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.”
What does Paul have to say about receiving this incredible honor?Jump to the 3:40 mark in the video below to see his onstage interview and award presentation.
Gluten-free products are now readily available in many grocery stories – and for good reason.One in 133 Americans has celiac disease, an autoimmune digestive disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food.As a result, people with celiac disease cannot tolerate gluten, a protein that is found in wheat, rye and barley products.
On September 13th, the United States recognizes Celiac Awareness Day as a result of a resolution passed by the Senate.The date has special meaning as it’s the birthday of Dr. Samuel Gee, the British pediatrician who offered the first full clinical picture of celiac disease in 1888 and also theorized that a special diet may help.Thanks to his research as well as ensuing medical advances, it is now possible to be tested for celiac disease antibodies and undergo further diagnostics, including a genetic test and/or biopsy. There are also numerous products, recipes and resources to support those on a gluten-free diet.
The problem, however, is that many people go undiagnosed.According to the National Foundation for Celiac Awareness (NFCA), which sponsors their own awareness month in May, 95% of celiac patients are undiagnosed or misdiagnosed.That means that up to three million Americans are suffering from the symptoms of celiac disease – which can include bloating, abdominal pain, diarrhea, nausea, migraines, rashes and joint pain – without knowing why.See this helpful checklist for a full list of symptoms as well as other conditions commonly linked with the disease.For example, a recent study found that celiac disease prevalence was 5-10 times higher in those with multiple sclerosis.
Think you or a family member might have celiac disease?Wish you could discuss it with someone who can relate?You can! Here at PatientsLikeMe, 115 members report celiac disease.Explore their profiles and get to know a patient with celiac disease.
Afterwards, PatientsLikeMe’sAaron Fleishmansat down with Dr. Brownstein to learn more about how the ICHG award is selected as well as how it spotlights PatientsLikeMe’s potential as a platform for genetic discovery.Listen in below to hear what Dr. Brownstein had to say about how your genetics can affect your condition – from how you metabolize drugs to how your disease will progress.
Held in Montreal, Canada, from October 11-15, 2011, the ICHG is the foremost meeting of the world human genetics community and takes place every five years.The anticipated attendance is 7,000 delegates from over 60 countries around the world.As part of her award, Dr. Brownstein will give a presentation entitled “An internet-based approach to enhance genetic data discovery in ALS” and receive complimentary registration to the five-day conference.
Just how difficult it is to win an ICHG Young Investigator Award?Dr. Brownstein was one of only 64 geneticists selected out of 770 applicants.In addition, her scientific abstract was one of 324 selected for presentation out of 3,932 submitted abstracts.In our book, that puts her in the top 10% of geneticists in the world.
Congratulations to Dr. Brownstein on this prestigious achievement.We look forward to publishing her report from the ICHG on the blog this fall.
CAMBRIDGE, MA–(Marketwire - Aug 23, 2011) - Today, PatientsLikeMe’s Research Director, Paul Wicks Ph.D., was named a TR35 Honoree and spotlighted as Humanitarian of the Year by MIT Technology Review magazine, which profiled him in an in-depth article and video. The TR35 list recognizes the world’s top innovators under the age of 35, spanning medicine, energy, computing, communications, nanotechnology, and other emerging fields.
“Technology innovation is key to driving growth and progress in the areas of research, medicine, business and economics,” said Jason Pontin, editor-in-chief and publisher of Technology Review. “This year’s group of TR35 recipients is driving the next wave of transformative technology and making an impact on the way we live, work and interact. We look forward to profiling and working with these technology leaders each year, and watching their continued advancement in their respective fields.”
Dr. Wicks has been honored for his work in connecting patients to advance real-world understanding of their diseases. A neuropsychologist by training, Dr. Wicks first became involved in online communities through BUILD-UK, an online forum for people with ALS in his native United Kingdom. He joined PatientsLikeMe in 2006, where he has architected the website’s medical framework that is currently being used by 110,000+ patients with more than 1,000 conditions. The work of Dr. Wicks and the PatientsLikeMe research team has been published in dozens of scientific articles, including the most recent in Nature Biotechnology on accelerating clinical development that reported on the effect of lithium on ALS.
“Paul has made a real difference in thousands of patients’ lives and helped to build a system that is transforming healthcare,” says Jamie Heywood, Co-founder and Chairman of PatientsLikeMe (and MIT alumni). “All of us at PatientsLikeMe are thrilled that he has been honored with both prestigious awards.”
Chosen by a panel of expert judges and the Technology Review editorial staff, who evaluated more than 300 nominations, Dr. Wicks will receive his award at the emtech MIT 2011conference held at the MIT Media Lab in Cambridge, MA from October 18-19, 2011. All of the 2011 TR35 winners will be featured the September/October issue of Technology Review and online at www.technologyreview.com/tr35/.
About PatientsLikeMe PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
About Technology Review, Inc. Technology Review is an independent media company owned by the Massachusetts Institute of Technology (MIT). More than two million people around the globe read our publications, in five languages and on a variety of digital and print platforms. We publish Technology Review magazine, the world’s oldest technology magazine (established 1899); daily news, analysis, opinion, and video; and Business Impact, which explains how new technologies are transforming companies, disrupting markets, or creating entirely new industries. We also produce live events such as the annual emtech MIT conference.
“Clinicians are used to seeing ALS patients who are or have been athletic. So is there a link, and if so, could exercise have a direct effect on the condition?”– BMJ Group Podcasts
In 2010, PatientsLikeMe researchers collaborated with the University of Oxford Motor Neuron Disease (MND) Centre in the UK on a study about ALS handedness.What they discovered is that when ALS patients get symptoms in their arms first, they’re more likely to get them in their dominant arm.However, there was no correlation between lower limb onset and the dominant leg.This noteworthy research was presented at the ALS MND Symposium the same year.
Recently, this paper was selected by the medical journal that published it as the “Patient’s Choice” article, meaning that it will be open access for all patients to read as well as the subject of a podcast.Tune in below to hear the podcast interview with the lead study author, Dr. Martin Turner, about what this research means and how it ties into his ongoing investigation of a possible connection between athleticism and ALS.(Jump to the 8:30 mark for his interview.)
Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in.This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company.Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.
After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way.Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers
If you’re a longtime college basketball fan, you definitely know Jim Valvano (“Jimmy V”), the beloved former NC State basketball coach and award-winning broadcaster.Valvano’s battle with bone cancer galvanized the sports world, leading to the creation of the The V Foundation for Cancer Research by ESPN and Valvano in 1993.18 years later, the foundation has raised more than $100 million for cancer research.
July 3rd through 13th marked “V Week,” when The V Foundation raises research funds each year in honor of Valvano with the ESPY Celebrity Golf Classic and an auction of signed sports memorabilia and one-of-a-kind sports experiences. If you listen to ESPN Radio, you may have heard them auctioning off these great sports items over the last 10 days. The auction has now ended, but you can still make a donation at any time.
Finally, if you haven’t already seen it – or it’s been a while – this is also the perfect time to watch Valvano’s famously moving ESPY Awards speech, in which he announced his foundation and gave it his trademark mantra – “Don’t give up, don’t ever give up” – just eight weeks before his death. It’s a speech that will make you laugh, cry and think, all three things that Valvano argues make for a full day and a full life.
Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day.Why?“Social media has changed our lives,” they wrote in 2010, prior to launching the event.“It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”
Mashable is encouraging everyone who uses social media to take part in the second annual celebration.Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter.We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.
That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients.Before, there was only the information and advice provided by your doctors.Now, you have access to a wealth of real-world experiences and data from patients around the globe.As a result, you can ask smarter questions, make better decisions and take greater control of your own care.
Social media has also helped to accelerate medical research.A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments.There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.
So if social media can help both patients and researchers, it’s worth celebrating, no?Share your thoughts on how social media has impacted your life in the comments section below.(And, yes, that would count as another social media activity!)
Mark Twain popularized the notion that there are three kinds of lies: “lies, damned lies, and statistics.” But there’s a cure for bad statistics, and that cure is openness.
When our study of the effects of lithium in ALS was published in Nature Biotechnology, we not only presented the usual background and analysis, but we also included all the data that were used to support the analysis. (The data were de-identified, of course.)
This “data openness” was one aspect of our study – as well as the ensuing media coverage in the Wall Street Journal and other outlets – that caught the eye of folks at the National Institute of Statistical Sciences (NISS). They were in the midst of organizing a workshop on observational medical studies (like our study), and they invited PatientsLikeMe to discuss our lithium research there. As one of the study authors, I went to represent PatientsLikeMe and give a talk entitled “Drug Efficacy in the Wild.” (Click here to download a PowerPoint of my presentation.)
Sitting in a roomful of statisticians for two days might be considered a form of torture by some, but it’s the sort of thing I enjoy as a Research Scientist. I look forward to sharing ideas with my colleagues. Besides, the motto of NISS is “The Statistics Community Serving the Nation,” a theme that dovetails nicely with what we’re trying to do here at PatientsLikeMe. We believe it’s through real-world data and statistics that you can put your experience in context as a patient.
Ultimately, the NISS workshop did not disappoint. I heard some interesting talks, and I learned some new techniques for future work. My own talk was well received, and our approach to the lithium analysis was called “refreshing.” There were a few people there who were not yet aware of PatientsLikeMe, and they were particularly fascinated by this new way in which patients could gather information and work together to learn about treating their illness.
Of course, none of this would be possible without you. Your shared data is what drives our research capabilities and helps us all answer the questions that we have about disease.So, as always, thank you, and keep on sharing!
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
3 Comments 
Conferences/Events, Openness, Rare Diseases, Research 
Permalink
