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 helping you minimize symptoms after your transplant? Yes – check out the “exercise treatments” that patients are currently adding to their profile.
- Will PatientsLikeMe partner with smaller nonprofits (like the Kidney Transplant/Dialysis Association (KTDA) and Quarter Century Club? We’re always open to speaking with nonprofits to see how we can work together. Send an email to email@example.com if you think a nonprofit you are involved in would like to partner with PatientsLikeMe.
- Can you only contact other patients publicly through the forum? No. The forum is a great gathering place for many of our patients, but you can also develop relationships one-on-one by sending private messages or leaving comments on other profiles.
- Do you have leaflets I can distribute at my dialysis center? Absolutely. If you’re interested in spreading the word in your support groups, you can download some materials on our Tell The World page. If you’d like to receive some more official leaflets to distribute at your Dialysis Center, send us an email with your request at firstname.lastname@example.org.
We are excited to attend this year’s U.S. Transplant Games. This will be our first time at the Games, so we are grateful to have our Team Mid New England pros guiding the way. If you’re coming to the Games, please stop by our booth at the Expo to say hello and pick up some goodies. And, if you see our logo on the back of a Team Mid New Englander, be sure to ask them for a limited edition PatientsLikeMe Pin. See you at the Games!