March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding. … Continue reading “Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month
Stand up and be counted during National Multiple Sclerosis Education and Awareness Month
Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1 To help raise awareness about MS,… Continue reading Stand up and be counted during National Multiple Sclerosis Education and Awareness Month
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“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused… Continue reading “Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine
Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data… Continue reading PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine
Tell one person about multiple myeloma in March
There’s a lot of healthcare awareness going on in March, everything from multiple sclerosis and brain disease to diabetes. March is also known as Multiple Myeloma Awareness Month, and from now until April, the International Myeloma Foundation (IMF) is getting the word out with their “Tell One Person” campaign. And that’s really all you have… Continue reading Tell one person about multiple myeloma in March
Getting involved during Multiple Sclerosis Awareness Week
Did you know that every year, the first week of March is dedicated to multiple sclerosis (MS) awareness in the United States? From March 3rd to March 9th, events will be held across the country to educate people about the four different kinds of MS and how the neurological condition impacts peoples’ lives. In the… Continue reading Getting involved during Multiple Sclerosis Awareness Week
Uniting for hope on Rare Disease Day 2014
Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it… Continue reading Uniting for hope on Rare Disease Day 2014
Subjects no more: what happens when trial participants realize they hold the power in clinical trials?
When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day… Continue reading Subjects no more: what happens when trial participants realize they hold the power in clinical trials?
Give the gift of life on National Donor Day
Some of us might give our significant others and family members flowers and chocolates on Valentine’s Day, but did you know that February 14th is also National Donor Day? That’s right – in the spirit of love and giving, today is all about celebrating past donors and raising awareness for the five points of life:… Continue reading Give the gift of life on National Donor Day