Team Mid New England

Listen Up! Here Comes The Patient Voice

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice! Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.

PatientsLikeMe Gets into the Spirit of the Transplant Games

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 Team Mid New England at the Games. Their blue shirts were easy to spot in the crowds of more than 7,000 people.  They wore our logo on their backs and traded our pins to spread the word about PatientsLikeMe.   On Saturday, we were able to gather them all for this fantastic team photo.   (See all of our photos from the weekend here). Their energy and excitement was contagious.  Check out this video of Team Mid New England marching into the Coliseum during Opening Ceremonies. At the Transplant Games, transplant recipients, living donors, and donor families all come together to celebrate life and honor their loved ones.  They say they come for sport, but really they come to share their stories, to meet one another, and to be a part of something greater than themselves.  It’s not dissimilar at PatientsLikeMe where transplant patients can find patients …

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U.S. Transplants Games – Here We Come!

A few weeks back, we were delighted to join the National Kidney Foundation of New England at their Transplant Games Team Meeting to give a demonstration of the PatientsLikeMe Transplants Community. Later this week, we’ll be joining Team Mid-New England as their official t-shirt sponsor as they “take the field” for the U.S. Transplants Games in Madison, Wisconsin. As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant.  Many of our patients print out their profile charts and share them with their doctors.  Beyond the individual learning, the power of the patient profile is that it is shared with the entire community.  The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same. At the end of the session, we had a lot of great questions.  Here are a few: Can you chart how exercise is …

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PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England.  In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community.  During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients,  became incredibly engaged and were excited to share their experiences.  Thanks to all those patients who stepped up from the start, as well as those who have since joined our site!  With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys.  A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word. Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.”  PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events.  Similarly, we will be joining forces (as an official t-shirt …

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