March 2014

PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Patient Experiences / By

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome […]

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“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

3 Comments / Patient Experiences, Pulmonary fibrosis / By

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made

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Are you at risk? American Diabetes Association Alert Day

1 Comment / Diabetes, Patient Experiences / By

  According to the American Diabetes Association (ADA), over 25 million people are living with type 2 diabetes in the United States, and 7 million aren’t even aware they have the condition. What’s more, 79 million people have prediabetes, a condition that can include several symptoms of diabetes.1 Do you know if you’re at risk

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“Post-MS, I’m one of the strongest people I know” – PatientsLikeMe MS member Jazz1982 opens up about her experiences with MS

4 Comments / Multiple Sclerosis / By

PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.

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Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

1 Comment / Diabetes, Patient Experiences / By

Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior

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“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month

1 Comment / Patient Experiences / By

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.    

“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month Read More »

Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

Multiple Sclerosis / By

  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,

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“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis

7 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

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

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