Just a couple of weeks ago we recognized #GivingTuesday, a day to celebrate generosity. But this idea of giving back isn’t just about one day – it’s bigger than that. We’re asking you to re-think what it means to give back by donating your health data this December for what we call #24DaysofGiving. And right… Continue reading At the #24DaysofGiving halfway point, you can help get us to our goal!
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Your data doing good: IPF treatment experiences
Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients… Continue reading Your data doing good: IPF treatment experiences
Christel’s story
Last month, we introduced Christel, a member of your 2015-2016 Team of Advisors living with type 1 diabetes. Here she talks about the important role peer support has played in her journey. Here’s her story: You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data… Continue reading Christel’s story
RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance
Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value CAMBRIDGE, MA., December 8, 2015—PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. A portion of the grant funds… Continue reading RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance
Gus’s story
Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS. Here he talks about his hope that the data he donates will help not just one person – but many. Here’s more of his story: You can see how much good data can do. During the month of… Continue reading Gus’s story
Your data doing good: The POEM Study
When you share your health data, we all learn Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good,… Continue reading Your data doing good: The POEM Study
Your data doing good: The Fitbit study
When you share your health data, we all learn During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members… Continue reading Your data doing good: The Fitbit study
Allison’s story
Last month we introduced Allison, a member of your 2015-2016 Team of Advisors living with bipolar II. She recently opened up in a video about how sharing her data on the site helped her recognize when she might have an episode, and partner better with her doctor to prevent new episodes from happening. You can… Continue reading Allison’s story
Crohn’s & Colitis Awareness Week: Are you #IBDAware?
Image courtesy of the Crohn’s & Colitis Foundation of America This week (12/1 through 12/7) is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants to know what awareness means to you, asking, “Are you #IBDAware?” Crohns disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect 1.6… Continue reading Crohn’s & Colitis Awareness Week: Are you #IBDAware?
Meet Christel from the PatientsLikeMe Team of Advisors
We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made… Continue reading Meet Christel from the PatientsLikeMe Team of Advisors