17 posts from May, 2013

PatientsLikeMe Names Martin Coulter as CEO

Posted May 30th, 2013 by

CAMBRIDGE, Mass.— May 30, 2013—PatientsLikeMe has appointed Martin Coulter to the position of Chief Executive Officer, the company’s first CEO since its founding in 2004. Responding to its growing patient community, revenue and customer base, PatientsLikeMe has hired Martin to bring a strategic and operational focus to the company as its business and products expand to better serve members and industry partners.


Jamie Heywood, who serves as Chairman and fellow co-founder with his brother Ben, said, “Martin brings that next level of operational excellence to PatientsLikeMe and is a perfect complement to Ben and me. His experience with hospitals and healthcare systems will both improve our services to patients and open new market opportunities where our unique patient-centered outcomes can drive improvements in healthcare.”

Coulter was previously Executive Vice President and General Manager of The Advisory Board Company, a publicly traded healthcare technology and services firm (NASDAQ: ABCO). In that position, he served a range of hospital and healthcare system clients, focusing on establishing best practice performance through data driven technology and consulting programs.  Before that, Coulter served as CEO of Citizens Energy Corporation, a nonprofit healthcare and energy organization. Earlier in his career, he was a principal at the Parthenon Group and a consultant at Bain & Company.

“Healthcare is in a dramatic stage of transformation and transition, and PatientsLikeMe is leading the way to ensure the patient experience guides this change,” said Coulter. “I’m excited to join such a talented team of individuals as we make our way ever closer to the epicenter of what will advance medicine most – understanding patients.”

Heywood added the company is at an exciting moment in its history. “We have grown to serve more than 200,000 members, have published over 30 patient-focused research studies, and have worked with the world’s leading healthcare companies and government groups to advance medicine. We’re proud that we’ve been able to elevate the patient voice in the healthcare discussion. With our growing patient membership and Martin’s lead, we are looking forward to ensuring patients have a growing impact on the way medicine is developed and delivered.”

Martin holds a Master’s degree in Business Administration from Harvard University. Originally an Irish national, he also holds a Master of Science degree in banking from University College, Dublin and a Bachelor of Arts degree in Economics from Trinity College, Dublin.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

“Shine a spotlight” and raise awareness for Cystic Fibrosis

Posted May 25th, 2013 by

May is Cystic Fibrosis (CF) Awareness Month and the Cystic Fibrosis Foundation (CFF) is working to “shine a spotlight on what CF is and the progress being made toward a cure.” The CFF has a terrific awareness page where you can find info on ways to get involved, like: Walk in Great Strides, “Take Action” advocacy, and social media campaigns.    


One creative way the CFF is asking you to donate to the cause actually doesn’t cost you a penny. They’d like everyone to “donate your Facebook cover image.” The picture that you see in this blog post can be downloaded on the CFF website and then uploaded onto your own Facebook page to help raise awareness.

If you’re living with Cystic Fibrosis, find others just like you in our growing community of more than 1,000 CF patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

PatientsLikeMe RFP for PCORI Funding

Posted May 24th, 2013 by

Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a separate funding announcement.

As an early pioneer of PPRNs, PatientsLikeMe plans to submit at least one Letter of Intent (LOI) to PCORI next month to declare our intention to submit a funding application later this year. We are looking for research partners who share our patient-centric values and desire to build a continuously learning healthcare system to join us as joint collaborators on our June LOI submission to PCORI. We welcome the opportunity to team with academic researchers, pharmacies, clinicians, patient advocacy organizations, and others who wish to partner with PatientsLikeMe.

DownloadRFPTo that end, we have authored a Request for Proposals (RFP) that outlines the nature of our expected funding application and the information we require from interested collaborators. The goal of the RFP is to identify quality research partners capable of defining high-value, patient-centric research goals worthy of PCORI funding that can be built upon PatientsLikeMe’s existing digital infrastructure and data model. Requirements for responding to this RFP are described in further detail within the RFP itself.

We look forward to receiving high-quality responses to this unique funding opportunity no later than Wednesday June 12, 2013.

PatientsLikeMe member cfidyk

“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David

Posted May 23rd, 2013 by

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life.

David Burns

Are you living with both psoriasis and psoriatic arthritis?
Yes, I am living with psoriasis, arthritis and also Crohn’s.

How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age?
I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst was growing up with psoriasis, from a social perspective. It shattered my self-confidence and self-esteem. I haven’t had a girlfriend my entire life.

What impact has living with psoriatic arthritis had on your life?
Well, I’ve basically hit the inflammatory jackpot. The odds were so low that I was destined to develop psoriasis, and from that arthritis, and following that, Crohn’s. Over the past few years, I’ve been on 4 different biologics, each failing to provide me with the promised relief that I crave so badly. I’ve tried many different systemic, biologic, and topical treatments over the years, all without any avail. I’ve been through hell and back and I’ve come out smiling.

About three years ago, my psoriasis and arthritis flared up so badly that I was a prisoner to my bed. I had to pull myself along the floor to even get to the toilet, my arthritis was that bad. I was put on extremely high doses of steroids. I put on a lot of weight due to the steroids and eating tons of junk food, and fell into a deep depression. I lost friends and had to drop out of school because I missed so much. As my conditions started to improve, I couldn’t stop myself from looking in the mirror and recognizing what I’ve just been through. I’d developed extremely strong mental strength. I’d reached the lowest point of my life and come out stronger than ever.

I used that strength to motivate myself to lose the weight I’d gained. I was weighing in at 118kg (260.14lbs). I took up interval training and weight lifting. There were days that my arthritis and psoriasis were so bad, but I used the mental strength I obtained and pushed myself as far as I could. The days that I was feeling the worst I’d make sure I trained double as hard. I started eating clean and I lost 40kg (88.18lbs), as well as gaining muscle. I’ve now taken up bodybuilding. My goal is to prove that anything is possible and to never let your health get in the way of your dreams. I still train 6 days a week. I use my previous and current pain as motivation to push me that extra step. So in some aspects, I’m grateful to have had the opportunity to develop this outlook on life, as I can apply it to every other aspect of my life. I started up my own IT company and I’ve been working really hard to develop it. I’m currently 85-90% covered with psoriasis, and I’ve been using crutches to walk around for the past couple of weeks. I still haven’t given up hope yet.

What’s it been like to connect with other psoriasis and psoriatic arthritis patients on PatientsLikeMe?
It’s been an enriching experience connecting with psoriasis and psoriatic arthritis patients on PatientsLikeMe. I’ve formed friendships that will last a long time. It’s very rare that you find people that share the same pain that you get from suffering with psoriasis and/or arthritis. It’s a great feeling being able to connect with people on an emotional level and really feel that they know what you’re going through, and that they really do understand. My friends and family try to understand what I go through, but they just can’t relate, as they’ve never experienced it for themselves. PatientsLikeMe takes away the “imagination” factor that my friends and family can only provide me with, when they say, “I can only imagine what you’re going through.”

What is one bit of info that no psoriasis or psoriatic arthritis patient should be without?
Every psoriasis and psoriatic arthritis patient needs to know that there is someone out there that is going through exactly what you’re going through. They should know that you’re not alone in this fight. There may be times when you’re cornered, with your back against the wall, but you’ll make it through with strength and hope. It’s not an easy feat by any means. However, life would be boring without a challenge. Try and find someone on PatientsLikeMe that understands what you’re going through. It helps, trust me. It’s a good feeling to know you can fight against your disease with someone else at the same time. They should also keep in mind that there is treatment that will help out there. You just need to be patient enough to find it. I’ve tried 4 biologics, without relief, but I still haven’t given up hope.

Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

Posted May 22nd, 2013 by

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here.

S-K 2

What were the most noticeable changes you had to make in your daily life?
[Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable.

As a caregiver, what things could you do to help Keith the most?
[Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.


International Clinical Trials Day: Raising awareness and forging new partnerships

Posted May 20th, 2013 by

Did you know that May 20th was chosen for International Clinical Trials Day because it’s the same day James Lind began his trial on scurvy? When it comes to drug development, clinical trials are an essential way to get direct feedback from patients. That’s why PatientsLikeMe is developing new tools and forging new partnerships.

Trials map

We’ve just finished work on our new Clinical Trials Tool. Just like before, you can search for trials by age, gender and condition. But now, we’ve also built an interactive map that shows exactly where trials you might be eligible for are located, anywhere in the world. It’s faster and easier than ever to find the right trial for you, right in your own neighborhood.

We’ve also just announced that we’re teaming up with Sanofi and the Center for Information & Study on Clinical Research Participation (CISCRP) to better enable you, the patient, to get involved with clinical trials. By combining the strengths of an online patient community, a pharmaceutical company and an educational organization, we’ll be better able to raise awareness and accelerate the drug development process. And for patients with life threatening diseases, speeding up this process is even more critical. You can check out more about the new partnership here.

PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform

Posted May 20th, 2013 by

Company Names Scientific Advisory Board for World’s First
Open-Participation Research Platform for Patient-Centered Health Outcome Measures

CAMBRIDGE, Mass.— May 20, 2013—Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange™ (ORE) platform (www.openresearchexchange.com). ORE puts patients at the center of the clinical research process and allows researchers to pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMe’s community of more than 200,000 members. The new platform and call for participation is being spotlighted today at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in New Orleans.

Supported by funding from the Robert Wood Johnson Foundation, PatientsLikeMe’s ORE is available for free to any researcher who wants to:

  • Leverage new, specialized tools to quickly design and field measures based on patient questionnaires;
  • Rapidly test new measures with real patients in multiple iterations, and get feedback on their instrument development;
  • Be among the first to browse and contribute to the world’s only open library of patient-reported instruments and health measurements.

PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. says, “We’re excited to move to the next phase of this important project, and to create an open environment where people who are interested in advancing medicine can easily collaborate on health outcome measures.”

The company has also named an ORE Scientific Advisory Board, a group Wicks says will lend scientific, academic, industry, and patient expertise as the platform develops. The board will also recommend and introduce participants to additional technologies and partners to accelerate their work. “Our board includes some of the most renowned and respected minds in scientific research. Together, they bring the academic experience, clinical perspectives, and patient focus that will be so instrumental to ORE’s users.”

Scientific Advisory Board members, whose full profiles can be found here, are:

  • Ethan Basch, M.D. of the University of North Carolina School of Medicine, Lineberger Comprehensive Cancer Center;
  • Patricia Brennan, R.N., Ph.D., of the University of Wisconsin-Madison School of Nursing and College of Engineering;
  • David Cella, Ph.D. of Northwestern University’s Feinberg School of Medicine, Department of Medical Social Sciences;
  • Ari Gnanasakthy, Head of Patient Reported Outcomes at Novartis;
  • Hugh Hempel, Co-Founder, Solution Therapeutics and Parent Advocist and Founder of The Addi and Cassi Fund;
  • Erin Holve, Ph.D., Senior Director of AcademyHealth;
  • Bryce Reeve, Ph.D., of University of North Carolina’s Gillings School of Global Public Health;
  • Sara Riggare, Ph.D. student at the Karolinska Institutet;
  • Sharon Terry, President and CEO of Genetic Alliance;
  • John Wilbanks, Chief Commons Officer at Sage Bionetworks and Founder of Consent to Research.

Dr. Basch says that PatientsLikeMe has fundamentally changed the landscape around patient self-reporting by proving that people “are willing and able to volunteer information that can be aggregated to provide valuable safety and effectiveness data. The opportunity for new questionnaires to be tested through online communities is exciting and novel, and is an example of investigator-patient partnering that can increase the efficiency and person-centeredness of research.”

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation’s largest philanthropy devoted exclusively to health and health care, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, measurable, and timely change. For 40 years the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime. For more information, visit www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter  or Facebook www.rwjf.org/facebook

“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand

Posted May 17th, 2013 by

Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her father passed away from idiopathic pulmonary fibrosis (IPF). She recently took some time to talk with us about her experiences with the disease and the benefits of online patient communities.


Can you tell us a little about yourself and your experience with IPF?
My father was diagnosed with IPF in July of 2006. He always had a chronic cough and never got it checked out until one day it got really bad and my step mom made him go get checked out. He had a chest X-ray and the doctor gave him the tentative diagnosis of IPF. Surely, the only true way to know if a person has IPF is through a lung biopsy so that’s what he had done, I believe in September of 2006.

There was a complication during the biopsy. His lung collapsed and he was in the hospital for about 6 weeks. The lung never did fully inflate. He ended up having 2 chest tubes while in the hospital. He was in good spirits though, always reassuring me that he was doing well and things would get better. Over the next few months he started the process of getting on the lung transplant list at Duke University. He did all the rigorous testing and lost the weight. I went to take care of him for a few days and while he had trouble with catching his breath when walking around, he was still walking on the treadmill to lose that weight. He was in good spirits even though he was exhausted. He was on oxygen therapy 24/7. At Christmas time, we spent the day together and he had a hard time talking because he couldn’t breathe very well. It was the last time I heard my father speak.

A few days later they moved to NC where they waited for the call. His health deteriorated quickly and about a month later he was rushed to the hospital because he couldn’t breathe. It was a Thursday when I got the call from my step mom that my dad was intubated and that my sister and me needed to go down to NC to be with him. She informed us that it wasn’t good and that it was the end. It was the hardest trip I ever had to make.


We walked up to his hospital room in the ICU and I slowed down before we got to his room and I looked in and backed away and fell to the floor, crying. I couldn’t believe that my father, this strong man, was lying so helpless in a hospital bed, so dependent on machines to keep him alive. The kind staff at the hospital helped me go to my father in the room where I sat by his side. I didn’t hold his hand right away. Touching isn’t something he liked so I respected that. We spoke with the doctors and nurses and organ donation coordinators. We waited as long as humanly possible for lungs to become available. It was decided that Saturday he would be taken off the list because he had been intubated too long and his heart was working too hard. We could have extubated on that day but I know my father and I believed he wanted to be an organ donor. So we postponed his passing by one day so that the donor team could get ready with recipients.

The next day around 7:30am we arrived at the hospital to say our goodbyes. I remember checking his monitors pretty regularly and when we walked in his heart rate was around 70 and when my sister and me finally held his hand, his heart rate went up to 87. We talked with him privately about what his final wishes were. We knew he couldn’t talk but we wanted to talk to him anyway and try to get any sort of response out of him. We waited a couple more hours for the stuff to be put in place and then they wheeled him down to the operating room. We waited in the family room for a few minutes where the coordinator went over with us what to expect. They said that if he breathes on his own for 10 minutes after he’s extubated he will be intubated again and taken back to his room. But this never happened.

We were there for him during his final minutes. Telling him that it was ok to move on, that we would be ok. I am next of kin so it was my decision to make him an organ donor and my decision to take him off life support. It’s my signature on those papers. Something I will never be able to change. The hardest thing I’ve ever had to sign in my life. We watched as he peacefully tried to breathe. After his last breath, we all continued to sob and the doctor confirmed that he had passed.

We had approx 2 minutes to say our final goodbye before they wheeled him in to the OR for organ recovery. It wasn’t a good atmosphere for us to be in when he passed because there were teams of doctors and nurses standing in this big room with us waiting for him to pass. But I tried not to focus on that part too much. My step mom was at the helm, talking to him while he tried to breathe. At about 10am on Jan 28 2007 my father passed away waiting for a lung transplant due to IPF.


You’ve been very active in the IPF community for a long time. How have you seen online communities help patients and caregivers with IPF?
I created the Pulmonary Fibrosis Awareness (PFA) group on Facebook initially as a memorial to my dad; just a place for my friends and family to go to remember him. It now has almost 5,000 members. I have met so many wonderful people through this group. Many who are patients and care givers. All have been affected by IPF in some way. This online group has become a community where they can share their experiences, trials and tribulations. A lot of members go on there to just read about other people’s issues. We have several “regular” members that post quite often. I feel like if I hadn’t made this group, some of these members never would have met and that is so humbling to me. Having an online community really helps in this digital age because many of those struggling with IPF aren’t able to leave the house or have trouble getting around in the community, so they are able to reach out and socialize over the internet. I am proud to have helped in that way.

How do you think information sharing platforms like PatientsLikeMe benefit patients?
I think it’s a fantastic tool for those dealing with any illness to track their progress. It’s multifaceted, somewhat user friendly and very well put together over all. It’s another great outlet for those who can’t leave the house due to their illnesses or those who can but want to document their life.

What are some other helpful resources that you think IPF patients should know about?
There are so many communities and organizations available to IPF patients. The PFA group is partnered with the Pulmonary Fibrosis Foundation, so a lot of our members come from there and some of the members of PFA go there for resources. There’s also the Coalition for Pulmonary Fibrosis. I get a lot of newsletters from them. They were the first organization to tell me about the new drug pirfenidone when it was in its clinical trial stage and now it’s in the manufacturing stage.

What’s one thing you think every patient with IPF might not know, but should?
MAKE MEMORIES STARTING NOW! I will never be able to create memories with my dad anymore. Had I known he was going to pass so quickly, I would’ve spent more time with him, called him more etc. Each day is a gift and each day a new memory should be made. Cherish them. You never know when it’ll end.

If you’re living with IPF, find others just like you in our growing community of almost 400 IPF patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum.


“Not in this fight alone.” An interview with multiple sclerosis patient Monica

Posted May 16th, 2013 by

Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and the importance of connecting with others.


When were you diagnosed with MS and what changes did you have to make in your daily life?
I was diagnosed in January 2005 after numerous complaints about not being able to feel my legs. I noticed the sensation changes primarily when I walked up stairs. I also noticed that I had lost sensation when I used the bathroom. That particularly scared me, so I went to the hospital and stayed there for 5 days. That’s when the doctors came in and gave me the diagnosis.

I was actually very scared of the diagnosis and I didn’t know much about MS at the time. The doctor did tell me that I would be in the hospital about 5 days more before he would discharge me. At that time, I was not working but I was searching for employment. After finding out, I researched MS along with continuing my job search. After discharge, I noticed how much information was available online dealing with MS and it overtook my job searching.

After you decided to stop working, what challenges did you face continuing your healthcare coverage?
I did not decide to stop working until 2 years after the diagnosis. I decided to get approved for disability through the Social Security Administration prior to leaving the workforce. My neurologist was my number one advocate. Once I applied and the process started, I got approved in 82 days. To me, that seemed like confirmation that I made the right decision. Although I didn’t have long to wait to be approved, it did not make it better for me to accept that Medicare would be my healthcare coverage from age 35 on out. The system was not created to care for 35 year olds and I knew there would be challenges. And boy was that a TRUE thought.

How has an online community like PatientsLikeMe helped you along the way?
PatientsLikeMe has helped me tremendously. When I was diagnosed, the MS community was much smaller than it is today. The forums always seem to really help me. If I have a question, it most likely has already been asked on PatientsLikeMe. I can truly say when I decided to change my disease-modifying drug, there was a whole forum talking about the drug and it really convinced me.

What is one thing you think every MS patients should know?
MS patients must realize that they are not in this fight alone. Besides predominate non-profit organizations dedicated to MS (National Multiple Sclerosis Society, Multiple Sclerosis Foundation, and Multiple Sclerosis Association) there are so many self-help groups that help with things. PatientsLikeMe gives us a voice that can help us to face our problems. PatientsLikeMe makes us feel that we are being heard. I truly appreciate the moderators of the forums and PatientsLikeMe as a whole.

Raising awareness for peripheral neuropathy, one picture at a time

Posted May 15th, 2013 by

Neuropathy Awareness Week is May 13th-17th and The Neuropathy Association has dedicated a page of its website to those who are getting involved. You’ll find images of people who are helping raise awareness at events all over the country. They’ve also created a list of upcoming events including a walk-a-thon and live Facebook chat.


Close to 20 million Americans live with this peripheral nerve disorder and while it’s most common among adults, it can start at any age. It’s frequently misdiagnosed or dismissed as a side effect of another disease like diabetes. In fact, 30% develop from an unknown cause, called ‘idiopathic.’[1]

If you’re living with peripheral neuropathy, find others just like you in our growing community of almost 1,500 neuropathy patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.

[1] http://www.neuropathy.org/site/PageServer?pagename=About_Facts

“Pathways to Wellness” Raising awareness for mental health

Posted May 14th, 2013 by

Mental Health America has been raising awareness for those with mental illness each May for more than 60 years, and this year’s theme is Pathways to Wellness. Here are just a few of their ‘key messages’ for the month…

  • Wellness – it’s essential to living a full and productive life
  • It’s more than an absence of disease. It involves complete general, mental and social well-being
  • Whatever our situation, we’re all at risk for stress

Mental Health

They’ve created a terrific toolkit that you can download with info on what exactly wellness is and four simple steps for taking care of your mind and body. You can also check out their wellness calendar that has a different wellness tip for every day of the month.

If you’re living with a mental illness, find others just like you in our growing mood communities on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

PatientsLikeMe and CISCRP Team Up with Sanofi to Spotlight Medical Heros and Clinical Trial Participation

Posted May 13th, 2013 by

CAMBRIDGE, Mass.— May 13, 2013—PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) announce a new partnership with global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials. The partnership will focus on: spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge); increasing patient awareness about clinical trial opportunities; and advancing PatientsLikeMe’s mission to accelerate research by analyzing patients’ real-world disease experiences.

The partnership will utilize the PatientsLikeMe’s Clinical Trial Awareness tool to match patients with relevant Sanofi clinical trials and CISCRP’s educational materials to inform patients and their support network about the clinical research process. Through the tool, patients can search for and be notified about trials based on age, sex, disease or condition, and location criteria.

As part of this collaboration, the clinical trial tool on PatientsLikeMe will become part of Sanofi’s clinical trial recruitment process for a range of conditions, including asthma, cardiovascular disease, diabetes and oncology. Additionally, the partners will work together to raise awareness among doctors of the benefits of clinical trials for their patients. This collaboration adds to CISCRP’s expansive outreach and education channel, including clinical research and health professionals, disease advocacy groups and patient communities.

“Tens of thousands of people are actively engaged in monitoring their health and sharing their experiences on PatientsLikeMe,” says PatientsLikeMe Co-founder and Chairman Jamie Heywood. “They’re not just helping each other, but contributing directly to research. They are heroes in the truest sense, ideal partners for medical discovery, and the best source for real-world, real-time evidence.”

“An integrative approach that combines patient education with recruitment communication is essential to engaging informed study volunteers,” says Ken Getz, CISCRP’s founder and chairman. “We’re very excited about our involvement in this groundbreaking collaboration.”

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

The Center for Information and Study on Clinical Research Participation (CISCRP), now in its ninth year is a nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. CISCRP provides a broad portfolio of products and services to educate and engage patients and enhance the participation experience. For more information about CISCRP’s educational initiatives visit www.ciscrp.org.

May 12th, International Awareness Day for Chronic Immunological & Neurological Diseases

Posted May 12th, 2013 by

Did you know that May 12th was chosen for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) because it’s also Florence Nightingale’s birthday? She was a statistician, social reformer and is credited as the founder of modern nursing. It’s also believed that she suffered from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). That’s just one of the several conditions highlighted on International Awareness Day. Some others are…

May 12

May12.org is hosting a 2013 Awareness campaign on their Facebook page that you can participate in right from home. They’re also encouraging everyone to help spread the word by calling local representatives and asking family members to participate.

“Band together for lupus awareness”

Posted May 10th, 2013 by

Lupus awareness has been observed since 1977. It was originally just one week in September. It’s since moved to October and now finally to May. And while the month may have changed, the message has always been the same; “raises awareness, secure funds and support those who are suffering” from this chronic inflammatory disorder.


There are events planned throughout the month that you can get involved in. There’s World Lupus Day on May 10th, Put on Purple Day May 17th, and the Lupus Awareness Faith-Based Weekend May 18-19. There’s also the Walk to End Lupus Now. Check out the Lupus Foundation of America website to find a walk near you.

If you’re living with lupus, find others just like you in our growing community of almost 4,000 lupus patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.