We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with… Continue reading Getting to know our Team of Advisors – Amy
Tag: community
PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness
For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far! Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and… Continue reading PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness
Update and results – the Patient Voice Analysis study
About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey
Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
FamilyWize Community Service Partnership is committed to helping improve the health and well being of individuals and communities. High-cost prescription medications can be the cause of financial stress for uninsured or under-insured consumers. In fact, cost is the number one reason people do not take their prescribed medications, which impacts the short-term and long-term health… Continue reading Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent… Continue reading PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
Recognizing the signs of IBS
Did you know that between 25 and 45 million people in the United States have IBS, but that many do not seek medical care for their symptoms?1 Are you one of them? Improved knowledge about IBS could lead to better treatments and care, and that’s why the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has… Continue reading Recognizing the signs of IBS
Seeing [MS]: The invisible symptoms – balance
Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak… Continue reading Seeing [MS]: The invisible symptoms – balance
New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year
Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact? It’s like what Ken Schwartz said during his battle with… Continue reading New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year
You can make a difference in April
Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month? Listen to Leslie Chambers, the president and CEO of the American… Continue reading You can make a difference in April