A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being […]
Getting to know our Team of Advisors – Steve Read More »
You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritis, gout, lupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person
Arthritis Awareness 101 Read More »
CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes. PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement
PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes Read More »
“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and
Seeing [MS]: The invisible symptoms – numbness Read More »
Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments. Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while
Schizophrenia: Living well and working towards a cure Read More »
CAMBRIDGE, MA, May 18, 2015—PatientsLikeMe today announced it has appointed Jason Johnson, PhD, as Executive Vice President and head of research and development (R&D). Johnson leads the company’s research, data science, and informatics teams, which focus on analyzing and merging patient-reported and other data types to develop models of disease progression and generate new insights
PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D Read More »
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
Getting to know our Team of Advisors – Amy Read More »
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
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.
Update and results – the Patient Voice Analysis study Read More »
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,
“Don’t go it alone” – IPF member Christine shares about her health journey Read More »
